Scared and need support

Becca,

It's now time to get ahold of a melanoma specialist. Basically what your surgeon has said is correct. There are different opinions on removing all of the nodes.  I haven't had it done but I can tell you that many have the drains in for longer then 1 or 2 weeks.

PET scan, I can talk about that. I'm not sure exactly how many I've had but somewhere around 20 done at 4 different institutions. Each place really does it differently. Only one place did I lie in a dark room.  Where I'm going now they let me watch tv.  The first  2 places I didn't drink anything, it all depends on the radiologist that reads it. If you are having a CT scan then you definitely drink something.   Even where I am now it depends on the tech as to what they give me to drink!  The last time I was given a choice of diet soda's and they mixed the contrast in it. I could not taste it!! It was difficult to drink that much but no taste.   Basically you should not be real active the day before. Go about your day but don't exercise. Some places will give you specific instructions on what to eat and what not to eat. Follow your institutions directions.   When doing the Pet for melanoma it does take longer then for other cancers. They will also be scanning your arms and legs since mel has a mind of it's own.  Sometimes my brain has been scanned and sometimes not. The brain does not show up well in a PET. 

You are in a scary place right now. Take a deep breath and surround yourself with positive thinking family. Do find yourself a mel specialist.  I'm not sure where Gainsville FL is but Dr. Weber is a well respected specialist at Moffitt in Florida.

People that have been dealing with mel for a long time have been trying to man the chat in the evenings. You might want to go in and ask some questions.

Linda

Stage IV since 06

Becca,

It's now time to get ahold of a melanoma specialist. Basically what your surgeon has said is correct. There are different opinions on removing all of the nodes.  I haven't had it done but I can tell you that many have the drains in for longer then 1 or 2 weeks.

PET scan, I can talk about that. I'm not sure exactly how many I've had but somewhere around 20 done at 4 different institutions. Each place really does it differently. Only one place did I lie in a dark room.  Where I'm going now they let me watch tv.  The first  2 places I didn't drink anything, it all depends on the radiologist that reads it. If you are having a CT scan then you definitely drink something.   Even where I am now it depends on the tech as to what they give me to drink!  The last time I was given a choice of diet soda's and they mixed the contrast in it. I could not taste it!! It was difficult to drink that much but no taste.   Basically you should not be real active the day before. Go about your day but don't exercise. Some places will give you specific instructions on what to eat and what not to eat. Follow your institutions directions.   When doing the Pet for melanoma it does take longer then for other cancers. They will also be scanning your arms and legs since mel has a mind of it's own.  Sometimes my brain has been scanned and sometimes not. The brain does not show up well in a PET. 

You are in a scary place right now. Take a deep breath and surround yourself with positive thinking family. Do find yourself a mel specialist.  I'm not sure where Gainsville FL is but Dr. Weber is a well respected specialist at Moffitt in Florida.

People that have been dealing with mel for a long time have been trying to man the chat in the evenings. You might want to go in and ask some questions.

Linda

Stage IV since 06

i would like to know also as i am having this done tommorow

Becca,

i am new to this as well and i was in a PANIC(see my earlier posts) also…hopefully a veteran out there can help explain things to you (and me)…you sound young…you are lucky to be staying in the hospital for a night and to get the lymphodema therapist…i get booted out after i come to and get to take home a sheet of paper about lymphodema…so it sounds like you are getting good care in that respect…and yes, i would be very upset if an oncologist was booting around the word 'survival' a lot…and if you are uncomfortable with this specialist maybe there is another for a second opinion?

what helped me calm down the panic was downloading some guided meditation mpgs onto my ipod…that way i can listen all the way to surgery and even in the mri machine….

here is the link:http://www.Healthjourneys.com i got the 'fight cancer' and 'successful surgery' mp3s

blessings

i would like to know also as i am having this done tommorow

Becca,

i am new to this as well and i was in a PANIC(see my earlier posts) also…hopefully a veteran out there can help explain things to you (and me)…you sound young…you are lucky to be staying in the hospital for a night and to get the lymphodema therapist…i get booted out after i come to and get to take home a sheet of paper about lymphodema…so it sounds like you are getting good care in that respect…and yes, i would be very upset if an oncologist was booting around the word 'survival' a lot…and if you are uncomfortable with this specialist maybe there is another for a second opinion?

what helped me calm down the panic was downloading some guided meditation mpgs onto my ipod…that way i can listen all the way to surgery and even in the mri machine….

here is the link:http://www.Healthjourneys.com i got the 'fight cancer' and 'successful surgery' mp3s

blessings

i would like to know also as i am having this done tommorow

Becca,

i am new to this as well and i was in a PANIC(see my earlier posts) also…hopefully a veteran out there can help explain things to you (and me)…you sound young…you are lucky to be staying in the hospital for a night and to get the lymphodema therapist…i get booted out after i come to and get to take home a sheet of paper about lymphodema…so it sounds like you are getting good care in that respect…and yes, i would be very upset if an oncologist was booting around the word 'survival' a lot…and if you are uncomfortable with this specialist maybe there is another for a second opinion?

what helped me calm down the panic was downloading some guided meditation mpgs onto my ipod…that way i can listen all the way to surgery and even in the mri machine….

here is the link:http://www.Healthjourneys.com i got the 'fight cancer' and 'successful surgery' mp3s

blessings

i would like to know also as i am having this done tommorow

Becca,

i am new to this as well and i was in a PANIC(see my earlier posts) also…hopefully a veteran out there can help explain things to you (and me)…you sound young…you are lucky to be staying in the hospital for a night and to get the lymphodema therapist…i get booted out after i come to and get to take home a sheet of paper about lymphodema…so it sounds like you are getting good care in that respect…and yes, i would be very upset if an oncologist was booting around the word 'survival' a lot…and if you are uncomfortable with this specialist maybe there is another for a second opinion?

what helped me calm down the panic was downloading some guided meditation mpgs onto my ipod…that way i can listen all the way to surgery and even in the mri machine….

here is the link:http://www.Healthjourneys.com i got the 'fight cancer' and 'successful surgery' mp3s

blessings

If you do a search on this site and in the archives for LND, you will find tons of information.  In addition, I have a few links to helpful posts on my website (link below) under Patient Perspectives.  Scroll down to LND / Lymphedema….

Best wishes,

Janner

If you do a search on this site and in the archives for LND, you will find tons of information.  In addition, I have a few links to helpful posts on my website (link below) under Patient Perspectives.  Scroll down to LND / Lymphedema….

Best wishes,

Janner

Hi Becca,

The reason they say "we don't know if removing the lymph nodes will affect your survival" is becuase they can't fully stage you until they know how many nodes are involved.  It could turn out that only the sentinel node they already took was the only one with melanoma in it – so then (duh) removing more wouldn't affect your chances.  Doctors don't always have the best way of phrasing things – you could end up being stage IIIa with an excellent progonsis.  Or yes, you could find out you have more extensive disease with a worse prognosis.  But then then again, prognoses are only useful if you're a bookie.  And maybe even not then, becuase new treatments are being trialed all the time, and as soon as somebody publishes a statistic, it's out of date already.  We're all individual.  So try really hard to think about living your beautiful life RIGHT NOW.  Don't give up a moment to that bastard melasuckanoma and his evil henchman fear.

Okay enough with my "mom speech!"  To answer your questions, PET is pretty easy.  Just relax and lay there.  I've never had to drink for PETs, only for CTs, but it's not like the awful chalky stuff they give you for colon imaging.  And yes, follow the directions they give about eating.  For me that was the worst – no complex carbs for two days.  No working out for 24 hours.  I turn in to a crab-apple!

I've had LND on my armpit.  It is a little more uncomfortable than the SNB was, because it is more extensive.  Pain meds worked pretty well though.  And I found I was in much better shape after the overnight from the LND than I was being released same-day for the WLE & SNB.  I think it was getting rehydrated with the IV that made the difference.  I had my drain in for 10 days.  If you are squeamish it's a little weird, seeing this blood-tinged fluid collecting in a "hand grenade" sized container taped to you.  Oh,and forget about wearing a bra whiile the drain in in.  My dear mother did tape me into one so I could go to church – it was kind of funny!  She used half a roll of athletic tape trying to attach the thing to me.  You will most likely need to say home from work (if you work outside the home) while the drain is in.  You will probably have some lifting restrictions while it is in, although I myself don't remember this part too clearly.

Let me tell you one other thing that's somewhat common – you may experience brief but sharp pains near your LND site for several weeks.  This happens becuase of the nerves being disrupted.  It will go away!  So fear not.

And then one other piece of encouragement – I have never had the slightest sign of lymphedema, even without therapy.  So while it's a real risk, it's just that – a RISK, not a guarantee.

And finally – here's that hug you're in need of   ((((( Becca )))))

KatyWI

Hi Becca,

The reason they say "we don't know if removing the lymph nodes will affect your survival" is becuase they can't fully stage you until they know how many nodes are involved.  It could turn out that only the sentinel node they already took was the only one with melanoma in it – so then (duh) removing more wouldn't affect your chances.  Doctors don't always have the best way of phrasing things – you could end up being stage IIIa with an excellent progonsis.  Or yes, you could find out you have more extensive disease with a worse prognosis.  But then then again, prognoses are only useful if you're a bookie.  And maybe even not then, becuase new treatments are being trialed all the time, and as soon as somebody publishes a statistic, it's out of date already.  We're all individual.  So try really hard to think about living your beautiful life RIGHT NOW.  Don't give up a moment to that bastard melasuckanoma and his evil henchman fear.

Okay enough with my "mom speech!"  To answer your questions, PET is pretty easy.  Just relax and lay there.  I've never had to drink for PETs, only for CTs, but it's not like the awful chalky stuff they give you for colon imaging.  And yes, follow the directions they give about eating.  For me that was the worst – no complex carbs for two days.  No working out for 24 hours.  I turn in to a crab-apple!

I've had LND on my armpit.  It is a little more uncomfortable than the SNB was, because it is more extensive.  Pain meds worked pretty well though.  And I found I was in much better shape after the overnight from the LND than I was being released same-day for the WLE & SNB.  I think it was getting rehydrated with the IV that made the difference.  I had my drain in for 10 days.  If you are squeamish it's a little weird, seeing this blood-tinged fluid collecting in a "hand grenade" sized container taped to you.  Oh,and forget about wearing a bra whiile the drain in in.  My dear mother did tape me into one so I could go to church – it was kind of funny!  She used half a roll of athletic tape trying to attach the thing to me.  You will most likely need to say home from work (if you work outside the home) while the drain is in.  You will probably have some lifting restrictions while it is in, although I myself don't remember this part too clearly.

Let me tell you one other thing that's somewhat common – you may experience brief but sharp pains near your LND site for several weeks.  This happens becuase of the nerves being disrupted.  It will go away!  So fear not.

And then one other piece of encouragement – I have never had the slightest sign of lymphedema, even without therapy.  So while it's a real risk, it's just that – a RISK, not a guarantee.

And finally – here's that hug you're in need of   ((((( Becca )))))

KatyWI

Becca,

I know how you feel I've been there.  All of us on this board have and that always made me feel better knowing I wasn't alone.  My PET didn't have contrast so I didn't drink anything.  I did have to lie still in a dark room for 45 min. before the scan.  They wouldn't let me listen to music or read.  I think they were trying to keep my brain "quiet" since that was part of the scan.

My LND was pretty easy.  They took 21 nodes out under my left arm.  I had a drain that stayed in 3 weeks.  I was out-patient and home that evening.  Be sure you or someone who will be helping you at home learn how to "strip" the drain.  That really helped get the fluid moving out of the wound.  I was really worried about getting the drain out, and didn't even feel it.  I've had virtually no lymphedima since my LND.  The only time I noticed any swelling was when we went to Fla. last June and I think it was a combo of the flight and the hot/humid weather.

As far as survival goes…everyone is different.  There are many on this board who are stage 4 and have been there many years.  I work with someone who was stage I who is 25 years out with nothing more.  I also know someone who is stage IIC who has been 3 or 4 years out and doing great. 

At some point treatment will be discussed.  Many here have done interferon, myself included.  Many centers don't offer it anymore.  It's a personal decision.  But be prepared to have it or another treatment discussed. 

I know all about the crying and all I can say is it does get easier.  I promise.

Amy S. in Michigan

Becca,

I know how you feel I've been there.  All of us on this board have and that always made me feel better knowing I wasn't alone.  My PET didn't have contrast so I didn't drink anything.  I did have to lie still in a dark room for 45 min. before the scan.  They wouldn't let me listen to music or read.  I think they were trying to keep my brain "quiet" since that was part of the scan.

My LND was pretty easy.  They took 21 nodes out under my left arm.  I had a drain that stayed in 3 weeks.  I was out-patient and home that evening.  Be sure you or someone who will be helping you at home learn how to "strip" the drain.  That really helped get the fluid moving out of the wound.  I was really worried about getting the drain out, and didn't even feel it.  I've had virtually no lymphedima since my LND.  The only time I noticed any swelling was when we went to Fla. last June and I think it was a combo of the flight and the hot/humid weather.

As far as survival goes…everyone is different.  There are many on this board who are stage 4 and have been there many years.  I work with someone who was stage I who is 25 years out with nothing more.  I also know someone who is stage IIC who has been 3 or 4 years out and doing great. 

At some point treatment will be discussed.  Many here have done interferon, myself included.  Many centers don't offer it anymore.  It's a personal decision.  But be prepared to have it or another treatment discussed. 

I know all about the crying and all I can say is it does get easier.  I promise.

Amy S. in Michigan

Hi Becca!  Sorry they found cancer in your lymph nodes.  What you didn't say was how much.  Did your Onc say it was microscopic or could they actually see it?  Also how many nodes?  Tell your mom not to panic your doing everything right!

Back to your questions, I found the surgery to be fairly easy.  If you got nauseous after you last surgery make sure and tell them so they can medicate you.  The drain isn't too bad, just terribly inconvenient.  I had my husband "strip" it and empty the collector for me at first, until I was brave enough to do it myself.  I did have to get a larger bra to ware with it, but actually a compression bra is a good idea after the drain comes out because I got lymphodema really bad in the breast (ouch!) .  Sleep with a pillow under your arm, it's much more comfortable. 

PET scan isn't bad at all, unless you are claustrophobic.  Just keep your eyes shut and think about something else.  The machine is pretty quiet and the one's I've been in only took about 10 minutes actually in the tube, if it was that long.  The whole process of drinking the stuff, injecting the dye and waiting for everyone takes the time. 

I'm sorry your mom freaked you out, maybe you need to take someone else with you next time if you can get away with it.  Alot of this battle is attitude.  We all grieve when we get the news, but then you have to go into battle mode.  So now's the time to show them what you made of, because you need you strength for recovery.  So you go girl!

Good Luck,

Mary

Stage 3

Hi Becca!  Sorry they found cancer in your lymph nodes.  What you didn't say was how much.  Did your Onc say it was microscopic or could they actually see it?  Also how many nodes?  Tell your mom not to panic your doing everything right!

Back to your questions, I found the surgery to be fairly easy.  If you got nauseous after you last surgery make sure and tell them so they can medicate you.  The drain isn't too bad, just terribly inconvenient.  I had my husband "strip" it and empty the collector for me at first, until I was brave enough to do it myself.  I did have to get a larger bra to ware with it, but actually a compression bra is a good idea after the drain comes out because I got lymphodema really bad in the breast (ouch!) .  Sleep with a pillow under your arm, it's much more comfortable. 

PET scan isn't bad at all, unless you are claustrophobic.  Just keep your eyes shut and think about something else.  The machine is pretty quiet and the one's I've been in only took about 10 minutes actually in the tube, if it was that long.  The whole process of drinking the stuff, injecting the dye and waiting for everyone takes the time. 

I'm sorry your mom freaked you out, maybe you need to take someone else with you next time if you can get away with it.  Alot of this battle is attitude.  We all grieve when we get the news, but then you have to go into battle mode.  So now's the time to show them what you made of, because you need you strength for recovery.  So you go girl!

Good Luck,

Mary

Stage 3

Hi Becca,

You do need to be in the hands of specialists…onc and surgeon and derm.  If these folks aren't, I wouldn't do anything until seeing one.

Now, if you are under the care of specialists and this is what's going down:  I had a PET/CT scan and had both injection and yummy stuff to drink.  Don't worry about taste and texture and amount if you have to drink…you'll do what you have to do.  That's what it all boils down to now…you do what you have to do and it won't look like any of our "to do lists" and the results and aftermaths will be similar but different.

Also, they can't tell you how long your drain will stay in.  It will stay in until the fluid runs clear. Mine was put in with my first surgery and they enlarged the system and left it in with my second surgery. TWO months total. I kid you not!  I invested in several xlarge shirts…even wore them in the pulpit…now's not the time to worry about fashion…but it really made me appreciate that I don't know what's going on under other peoples' chothes and what they may be accomodating.  I'm a much less judgemental person now and fired from the fashion police.

As far as what the surgery is like.  You'll sleep through it and won't remember a thing. Promise. You may have odd aches & pains because they will move you however they have to move you to do what they have to do.  I had the worse neck and shoulder aches that only physical therapy could help.  The hospital did give me a small pillow to keep my arm elevated with and I still sleep with a small pillow under my arm.

The drain comes with it and you'll get used to it. Mine went from the left of my left armpit and the tube came around and attached to a collection tube that was taped between my breasts.  That was in 2008 and I still can't wear a regular bra because of where they all hit my scar tissue. I wear camisoles with built-in sports bras.  I will say that different positions will cause changing the tube to feel different.  Comfort-level-wise. I found if I laid on my right side it was much better than sitting up. Experiment to find what position is most comfortable for you.

I developed lymphedema within a couple of weeks after the drainage was removed.  Quickly.  My arm and hand looked like a balloon that would pop if someone stuck a pin in it and I wear a compression sleeve & glove and will for life.  I can do what I have to do.  I did learn that sometimes patients develop lymphedema 20 years after surgery.  Most patients never develop it, I was in the small percentage that do.  I can live with that because I'm alive. What you have to deal with, you'll deal with.

As for their use of "survival" etc, they're doctors and they have to do that. You're dealing with cancer and it's part of their job to tell you the facts as best they can so you can make the best decisions that you can.  I hate to sound harsh, but that's the world you're in now.  Trust me, it's much better TO know than NOT to know!  Think about that!  Which means they have to tell you that anything, ANYTHING, they do, may or may not affect what happens in the future. 

Mom will have to get it together, for both your sakes, and you'll have to understand that this is serious.  You're in a different world now.  One you didn't choose, but this is where you are.  Crying will help in the beginning, but it will be to your advantage to make some decisions right now. Decide if you're going to fight however you choose OR if you're going to hope this is all a bad dream that will go away.  Decide if you're in it to win it OR if this isn't what you bargained for so pretend it doesn't exist…pretty close to the first choice listed!

Decide if you're tough or not.  Decide if you're going to have hope and be positive OR if you're going to give up and be pessimistic.

These decisions will color all your future decisions and how well and long you "survive."   Hope is essential and attitude is key.  Fight or flight. Full or empty.  Lemon meringue pie or lemon.

Lord, in Your mercy, we've got Becca and 2B who need hope, positiveness, peace, calm, determination, and support. Life is changing and that's scary stuff!  Tears flow!  Hold their tears and dry their eyes. Be with them as they move through this time and season of their lives. Open doors to doctors and treatments that need opening and grant your wisdom in each case. And God, let them each feel Your presence. Amen.

Grace and peace friends,

Carol

Hi Becca,

You do need to be in the hands of specialists…onc and surgeon and derm.  If these folks aren't, I wouldn't do anything until seeing one.

Now, if you are under the care of specialists and this is what's going down:  I had a PET/CT scan and had both injection and yummy stuff to drink.  Don't worry about taste and texture and amount if you have to drink…you'll do what you have to do.  That's what it all boils down to now…you do what you have to do and it won't look like any of our "to do lists" and the results and aftermaths will be similar but different.

Also, they can't tell you how long your drain will stay in.  It will stay in until the fluid runs clear. Mine was put in with my first surgery and they enlarged the system and left it in with my second surgery. TWO months total. I kid you not!  I invested in several xlarge shirts…even wore them in the pulpit…now's not the time to worry about fashion…but it really made me appreciate that I don't know what's going on under other peoples' chothes and what they may be accomodating.  I'm a much less judgemental person now and fired from the fashion police.

As far as what the surgery is like.  You'll sleep through it and won't remember a thing. Promise. You may have odd aches & pains because they will move you however they have to move you to do what they have to do.  I had the worse neck and shoulder aches that only physical therapy could help.  The hospital did give me a small pillow to keep my arm elevated with and I still sleep with a small pillow under my arm.

The drain comes with it and you'll get used to it. Mine went from the left of my left armpit and the tube came around and attached to a collection tube that was taped between my breasts.  That was in 2008 and I still can't wear a regular bra because of where they all hit my scar tissue. I wear camisoles with built-in sports bras.  I will say that different positions will cause changing the tube to feel different.  Comfort-level-wise. I found if I laid on my right side it was much better than sitting up. Experiment to find what position is most comfortable for you.

I developed lymphedema within a couple of weeks after the drainage was removed.  Quickly.  My arm and hand looked like a balloon that would pop if someone stuck a pin in it and I wear a compression sleeve & glove and will for life.  I can do what I have to do.  I did learn that sometimes patients develop lymphedema 20 years after surgery.  Most patients never develop it, I was in the small percentage that do.  I can live with that because I'm alive. What you have to deal with, you'll deal with.

As for their use of "survival" etc, they're doctors and they have to do that. You're dealing with cancer and it's part of their job to tell you the facts as best they can so you can make the best decisions that you can.  I hate to sound harsh, but that's the world you're in now.  Trust me, it's much better TO know than NOT to know!  Think about that!  Which means they have to tell you that anything, ANYTHING, they do, may or may not affect what happens in the future. 

Mom will have to get it together, for both your sakes, and you'll have to understand that this is serious.  You're in a different world now.  One you didn't choose, but this is where you are.  Crying will help in the beginning, but it will be to your advantage to make some decisions right now. Decide if you're going to fight however you choose OR if you're going to hope this is all a bad dream that will go away.  Decide if you're in it to win it OR if this isn't what you bargained for so pretend it doesn't exist…pretty close to the first choice listed!

Decide if you're tough or not.  Decide if you're going to have hope and be positive OR if you're going to give up and be pessimistic.

These decisions will color all your future decisions and how well and long you "survive."   Hope is essential and attitude is key.  Fight or flight. Full or empty.  Lemon meringue pie or lemon.

Lord, in Your mercy, we've got Becca and 2B who need hope, positiveness, peace, calm, determination, and support. Life is changing and that's scary stuff!  Tears flow!  Hold their tears and dry their eyes. Be with them as they move through this time and season of their lives. Open doors to doctors and treatments that need opening and grant your wisdom in each case. And God, let them each feel Your presence. Amen.

Grace and peace friends,

Carol

Becca,    I have never had a PET scan, so I can't comment on that.    My orig diag was March 2005, Stage III, after my SNB (left axilla) showed two sentinal nodes with small levels of melanoma, the mole was on my left midriff.    My total lymph node dissection (LND) was delayed until Oct 2005, as I was a participant in a study that followed my progress with ultrasound of the lymphnodes, looking for change.   Two changed and the total removal was done in October with NO detection of melanoma.   The study was to follow patients without doing total LND, the study statement that much of the time total LND results in no evidence of melanoma and sometimes there are complications from the surgery.

After that, I had small recurrences on my left breast (not lumps, just little red dots on top of the skin) beginning in Nov 07 through April 08, resulting in a mastectomy of the left breast in May 2008.    I have had not recurrences since then.    I did not choose to do interferon, my choice.   I was 56 when my ordeal began.    So far, so good!!!   I have some lymphedema in my left arm, which was helped by manual lymphatic drainage therapy.   It is not that bothersome.   At the worst, I wore a compression sleeve, like a tight stocking, that was easily covered by long-sleeved clothing–if it was warm weather, I would be selective in wearing the sleeve at home and not when I went out, if I was somehow feeling self-conscious about it.

I am sorry that you were part of the "survival" conversation.   That word, and "survivability" drive me crazy, too—-but now I like to throw those words around to the people who might say "it's only skin cancer."   There are a lot of frightening words, statements, uncertainties, speculations, about melanoma.   In the beginning, where you are, it's awful to hear those un-encouraging words, and it's expected that they would upset you so.

I cried a LOT, I'm sure every single day for the two weeks before my wide local excision and SNB.   I cried a LOT after that, trying to adjust to "having" cancer, having melanoma, accepting that you are not entirely free of it.   I cried a LOT when I came to this site and read of people who valiantly battle in Stage IV.   And I wept with JOY over the successes and survival of our fellow warriors.    After six years, I don't cry so much anymore.   But,  I'm still in panic mode when I have my semi-annual check-ups.

Surgery is scarey in itself, any surgery.   You will be fine.   Let people take care of you.   Take your pain meds.    Rest.  Drink a lot of fluids.   You'll get used to the drainage tube (mine was in for 10 to 14 days??).   I wore a zip-up compression type bra after the SNB.    My hint for you is to buy yourself large button up tops, or cami-type tops larger than normal that you could step into, even elastic type sweat pants.   It might be difficult to put something on over your head, or to reach to pull up and button slacks.   I still ahve my extra-sized t-shirt that I cut up the middle to wear over my spaghetti-type strapped undergarment that matched.   Sometimes I take it to the doctor to avoid that darned paper garment.   Oh, and I slept in a barcolounger after the surgery, with my arm on a pillow.   I had difficulty pushing up to get out of bed,but that was my issue–you might be better at it.   You will learn how to strip the drainage tube, empty the bulb and measure the output.   Yeh, it's kind of hard to look at, I guess.   But somehow it becomes "your" thing and you'll deal with it.   Once you have your plan in place, really, you will start to take control.   You have already by finding this site!!   I can't tell you don't be afraid or don't cry.   It's okay.   We've all been there.   Just know that we are here, survivors, living, loving and laughing again.   I did see my daughter get married, another one to be married this fall.  I did see my son graduate from college.    I'm happy.   You will be, too.    God bless.

CarolA                                                                                                                                                                                         Stage III andholding                                                                                                                                                                                       Am

herst, NY 

Becca,    I have never had a PET scan, so I can't comment on that.    My orig diag was March 2005, Stage III, after my SNB (left axilla) showed two sentinal nodes with small levels of melanoma, the mole was on my left midriff.    My total lymph node dissection (LND) was delayed until Oct 2005, as I was a participant in a study that followed my progress with ultrasound of the lymphnodes, looking for change.   Two changed and the total removal was done in October with NO detection of melanoma.   The study was to follow patients without doing total LND, the study statement that much of the time total LND results in no evidence of melanoma and sometimes there are complications from the surgery.

After that, I had small recurrences on my left breast (not lumps, just little red dots on top of the skin) beginning in Nov 07 through April 08, resulting in a mastectomy of the left breast in May 2008.    I have had not recurrences since then.    I did not choose to do interferon, my choice.   I was 56 when my ordeal began.    So far, so good!!!   I have some lymphedema in my left arm, which was helped by manual lymphatic drainage therapy.   It is not that bothersome.   At the worst, I wore a compression sleeve, like a tight stocking, that was easily covered by long-sleeved clothing–if it was warm weather, I would be selective in wearing the sleeve at home and not when I went out, if I was somehow feeling self-conscious about it.

I am sorry that you were part of the "survival" conversation.   That word, and "survivability" drive me crazy, too—-but now I like to throw those words around to the people who might say "it's only skin cancer."   There are a lot of frightening words, statements, uncertainties, speculations, about melanoma.   In the beginning, where you are, it's awful to hear those un-encouraging words, and it's expected that they would upset you so.

I cried a LOT, I'm sure every single day for the two weeks before my wide local excision and SNB.   I cried a LOT after that, trying to adjust to "having" cancer, having melanoma, accepting that you are not entirely free of it.   I cried a LOT when I came to this site and read of people who valiantly battle in Stage IV.   And I wept with JOY over the successes and survival of our fellow warriors.    After six years, I don't cry so much anymore.   But,  I'm still in panic mode when I have my semi-annual check-ups.

Surgery is scarey in itself, any surgery.   You will be fine.   Let people take care of you.   Take your pain meds.    Rest.  Drink a lot of fluids.   You'll get used to the drainage tube (mine was in for 10 to 14 days??).   I wore a zip-up compression type bra after the SNB.    My hint for you is to buy yourself large button up tops, or cami-type tops larger than normal that you could step into, even elastic type sweat pants.   It might be difficult to put something on over your head, or to reach to pull up and button slacks.   I still ahve my extra-sized t-shirt that I cut up the middle to wear over my spaghetti-type strapped undergarment that matched.   Sometimes I take it to the doctor to avoid that darned paper garment.   Oh, and I slept in a barcolounger after the surgery, with my arm on a pillow.   I had difficulty pushing up to get out of bed,but that was my issue–you might be better at it.   You will learn how to strip the drainage tube, empty the bulb and measure the output.   Yeh, it's kind of hard to look at, I guess.   But somehow it becomes "your" thing and you'll deal with it.   Once you have your plan in place, really, you will start to take control.   You have already by finding this site!!   I can't tell you don't be afraid or don't cry.   It's okay.   We've all been there.   Just know that we are here, survivors, living, loving and laughing again.   I did see my daughter get married, another one to be married this fall.  I did see my son graduate from college.    I'm happy.   You will be, too.    God bless.

CarolA                                                                                                                                                                                         Stage III andholding                                                                                                                                                                                       Am

herst, NY 

PET Scan is no big deal.  I have had many of them.  I have had so many CTs and PETs I have lost my body hair, so no more shaving underarms and legs and bikini wax (Although  I don't wear one).  But I still have the hair on my head because I had an MRI only a couple of times for the brain tumor, it wasn't a scalp tumor but a brain tumor and that surgery was no picnic.

Regarding your surgery. I had the same surgery Stage IIIB, I believe, and it wasn't great but it isn't the worst.  If she can to everything at one time that's probably better than what I went through which was two surgeries.  Hopefully she won't take too many lymphnodes because if they are healthy you need them.  Also hopefully she is a Oncology Surgeon. 

The drain is a pain, but it will be out soon and a good suggestion after surgery is physical therapy.  It helped me tremendously.  And you wll probably need a compression sleeve as well, but you should be able to get that from the physical therapist. 

Since I had two surgeries unfortunately it left me with a terrible chronic pain issue, but again physical therapy and a good pain management doctor should help with that.

Good Luck and fair winds and following seas

C

PET Scan is no big deal.  I have had many of them.  I have had so many CTs and PETs I have lost my body hair, so no more shaving underarms and legs and bikini wax (Although  I don't wear one).  But I still have the hair on my head because I had an MRI only a couple of times for the brain tumor, it wasn't a scalp tumor but a brain tumor and that surgery was no picnic.

Regarding your surgery. I had the same surgery Stage IIIB, I believe, and it wasn't great but it isn't the worst.  If she can to everything at one time that's probably better than what I went through which was two surgeries.  Hopefully she won't take too many lymphnodes because if they are healthy you need them.  Also hopefully she is a Oncology Surgeon. 

The drain is a pain, but it will be out soon and a good suggestion after surgery is physical therapy.  It helped me tremendously.  And you wll probably need a compression sleeve as well, but you should be able to get that from the physical therapist. 

Since I had two surgeries unfortunately it left me with a terrible chronic pain issue, but again physical therapy and a good pain management doctor should help with that.

Good Luck and fair winds and following seas

C

Dear Becca,

After being plagued with numerous health issues since I have had this disease from the 1980s, my best advice to you is get all the information you can regarding all the procedures and therapies and then just get it in your mind that you just need to do it.  Be strong.  Don't be scared or weak, that's what this disease thrives on.  I've stayed angry and strong and I'm still here.  IIIA, although I will tell you after almost 30 years I am becoming tired. 

JJ

Dear Becca,

After being plagued with numerous health issues since I have had this disease from the 1980s, my best advice to you is get all the information you can regarding all the procedures and therapies and then just get it in your mind that you just need to do it.  Be strong.  Don't be scared or weak, that's what this disease thrives on.  I've stayed angry and strong and I'm still here.  IIIA, although I will tell you after almost 30 years I am becoming tired. 

JJ

Becca,

Your mom loves you, and she's scared to death. That being said, if you need to be firm with her and say "mom, if you are going to freak out on me, I just can't talk with you right now", then do so. Firm boundaries are ok! 

My mother-in-law is very dramatic "oh God, your kids growing up with no mom!". This is NOT what I need to hear, so I politely and firmly tell her that praying for me is the most helpful thing she can do, and I need to go know, because I am not listening to her negative reaction.

I don't know if you live at home?, but even so, you have the right to surround yourself with HELPful people, mom included. 
 

Drains are not so bad, I've seen very informative posts here already. For all my PETS, I just close my eyes and pray. It does take awhile, but it's not hard or creepy particularly. I'll take a PET over a surgery as far as anxiety, and I do realize you WILL have surgery too. I've had five so far.

Totally understand the flood of tears. It's like waves in the ocean: they come and go, and that's ok! 

Jeremiah 29:12 For I know the plans I have for you, declares the Lord. Plans to prosper you and not to harm you, plans to  give you HOPE and a FUTURE. 

Hugs from Delaware!

Becca,

Your mom loves you, and she's scared to death. That being said, if you need to be firm with her and say "mom, if you are going to freak out on me, I just can't talk with you right now", then do so. Firm boundaries are ok! 

My mother-in-law is very dramatic "oh God, your kids growing up with no mom!". This is NOT what I need to hear, so I politely and firmly tell her that praying for me is the most helpful thing she can do, and I need to go know, because I am not listening to her negative reaction.

I don't know if you live at home?, but even so, you have the right to surround yourself with HELPful people, mom included. 
 

Drains are not so bad, I've seen very informative posts here already. For all my PETS, I just close my eyes and pray. It does take awhile, but it's not hard or creepy particularly. I'll take a PET over a surgery as far as anxiety, and I do realize you WILL have surgery too. I've had five so far.

Totally understand the flood of tears. It's like waves in the ocean: they come and go, and that's ok! 

Jeremiah 29:12 For I know the plans I have for you, declares the Lord. Plans to prosper you and not to harm you, plans to  give you HOPE and a FUTURE. 

Hugs from Delaware!

Becca,

Finding this forum is really a godsend for someone just beginning their journey with melanoma.  I am not a patient but a caregiver, and my husband was diagnosed in November 2008 with Stage III disease.  He is currently NED and has been since the removal of his auxilary nodes – three had tested positive – and one year of Interferon.  They are right about not knowing if the surgery will cure you, but if there are any nodes left with even microscopic disease, it is best they come out.  David's recovery was lengthy, and he had the drain in for 4 weeks – it was a pain in the *ss for him, but he got through it.  To date, he has never had an issue with lymphadema.  I remember specifically using a shoe lace to hold the drains around his neck so he could shower – and make sure you pack a button down shirt – you will not be able to put a t-shirt over your head for awhile.  Dave's back is still numb from his surgery, He never regained feeling in that area.  Our insurance won't cover PET scans, so he has never had one.

As far as your Mom, it is scary seeing your child sick – and things are serious.  That initial confrotation with "survival" is a moment I think every patient remembers – but remember, it's a number – and you are a person.  David's oncologist told him this: "you have a 50/50 chance, and I have no idea what side of the fence God has placed you".  Very scary – we cried the whole rest of the day.  But that was 2 1/2 years ago, and he's still doing well. 

I hope your surgery and recovery goes well for you.  Cry if you have to cry, but don't forget to laugh too.  Sending lots of hugs your way 🙂

Becca,

Finding this forum is really a godsend for someone just beginning their journey with melanoma.  I am not a patient but a caregiver, and my husband was diagnosed in November 2008 with Stage III disease.  He is currently NED and has been since the removal of his auxilary nodes – three had tested positive – and one year of Interferon.  They are right about not knowing if the surgery will cure you, but if there are any nodes left with even microscopic disease, it is best they come out.  David's recovery was lengthy, and he had the drain in for 4 weeks – it was a pain in the *ss for him, but he got through it.  To date, he has never had an issue with lymphadema.  I remember specifically using a shoe lace to hold the drains around his neck so he could shower – and make sure you pack a button down shirt – you will not be able to put a t-shirt over your head for awhile.  Dave's back is still numb from his surgery, He never regained feeling in that area.  Our insurance won't cover PET scans, so he has never had one.

As far as your Mom, it is scary seeing your child sick – and things are serious.  That initial confrotation with "survival" is a moment I think every patient remembers – but remember, it's a number – and you are a person.  David's oncologist told him this: "you have a 50/50 chance, and I have no idea what side of the fence God has placed you".  Very scary – we cried the whole rest of the day.  But that was 2 1/2 years ago, and he's still doing well. 

I hope your surgery and recovery goes well for you.  Cry if you have to cry, but don't forget to laugh too.  Sending lots of hugs your way 🙂

Hi Becca,

I have melanoma stage 3C. In January of this year, had lymph nodes removed from my axilla . Surgery went really well; I can move my arm just fine, no lymphedema, and the drain (a nuisance all right) came out after a week. The scans are  another nuisance. After the first time , you know what to expect and then it's not too bad at all. I have just started on a drug trial (MAGE 3A) and am presently in remission.  Life is good for now.

     I understand your fears, as I was a real worrier at first. Now, much less so. We are all in this together. You will be in my thoughts and prayers,

Hugs and wishing you the best,

Carole

Hi Becca,

I have melanoma stage 3C. In January of this year, had lymph nodes removed from my axilla . Surgery went really well; I can move my arm just fine, no lymphedema, and the drain (a nuisance all right) came out after a week. The scans are  another nuisance. After the first time , you know what to expect and then it's not too bad at all. I have just started on a drug trial (MAGE 3A) and am presently in remission.  Life is good for now.

     I understand your fears, as I was a real worrier at first. Now, much less so. We are all in this together. You will be in my thoughts and prayers,

Hugs and wishing you the best,

Carole

Dear Becca,

I'm Stage IIIa, Melanoma and had a golf ball sized tumor in my right armpit.  It depdends on how big the tumor is and how many lymphnodes they decide to remove.

Hopefully this surgery has changed since my surgery in 2006.  I first had the tumor removed, then another surgery for 26 lymph nodes.  It wasn't fun but you can get through it.  The pet scan is a piece of cake.  It just takes a long time for the contrast fluid to move through your body.  Its nothing to be afraid of.

The drain thing is a pain but you get over it and the whole surgery and recovery is pretty scarey, but know you can make it and afterward get physical therapy or you will have a hard time with your arm.  I had 8 weeks physical therapy afterward.

I wish you the best of luck and God Speed.

CKasper

Dear Becca,

I'm Stage IIIa, Melanoma and had a golf ball sized tumor in my right armpit.  It depdends on how big the tumor is and how many lymphnodes they decide to remove.

Hopefully this surgery has changed since my surgery in 2006.  I first had the tumor removed, then another surgery for 26 lymph nodes.  It wasn't fun but you can get through it.  The pet scan is a piece of cake.  It just takes a long time for the contrast fluid to move through your body.  Its nothing to be afraid of.

The drain thing is a pain but you get over it and the whole surgery and recovery is pretty scarey, but know you can make it and afterward get physical therapy or you will have a hard time with your arm.  I had 8 weeks physical therapy afterward.

I wish you the best of luck and God Speed.

CKasper