The information on this site is not intended or implied to be a substitute for professional medical advice, diagnosis or treatment. Content within the patient forum is user-generated and has not been reviewed by medical professionals. Other sections of the Melanoma Research Foundation website include information that has been reviewed by medical professionals as appropriate. All medical decisions should be made in consultation with your doctor or other qualified medical professional.

New Patient need info on lymphoscintigraphy Please

Forums General Melanoma Community New Patient need info on lymphoscintigraphy Please

  • Post
    Rendergirl
    Participant

    I'm new here, just diagnosed with at least Stage 2 Malignant Melano on my upper chest. Next week I go in for pre-surgical bloodwork and lymphoscintigraphy and the day after is extensive surgery and lymph node biopsy. The lymphoscintigraphy sounds scarier than the actual surgery to me, the surgeon looked me right in the eye and said it would hurt, and some people complained of burning. If anyone has had this, please can you tell me your experience?? Level 1-10 for pain?

    I'm new here, just diagnosed with at least Stage 2 Malignant Melano on my upper chest. Next week I go in for pre-surgical bloodwork and lymphoscintigraphy and the day after is extensive surgery and lymph node biopsy. The lymphoscintigraphy sounds scarier than the actual surgery to me, the surgeon looked me right in the eye and said it would hurt, and some people complained of burning. If anyone has had this, please can you tell me your experience?? Level 1-10 for pain? I know everyone is different, but I feel the more info I have, the better I'll handle it, and I'm terrified.

    Thanks….

    Loading spinner
Viewing 17 reply threads
  • Replies
      Carol Taylor
      Participant

      I remember mine clearly from two years ago and I write this as someone who has a fairly high pain tolerance and as someone who, up till melanoma, absolutely hated all medical procedures, even getting my finger pricked.

      I was given three injections, right IN the place that was healing from where my mole was removed.  While one tech was doing that, another tech was there to let my squeeze the bejeezus out of his hand. 

      Each injection hurt like crap, pardon my french.  Big needle, right in a healing incision, blood squirted all over the place.  It's painful and not pretty.

      But, only the injections hurt.  I don't recall burning, but as you say, everyone's different.  And it's necessary.

      I learned from all these tests that I didn't know existed that I can take what they throw at me and these tests will work together to save my life.  Once the dye is in, there's really nothing left to the test to fear.  It's just those initial injections of dye.  You'll live through it, that's the main thing.

      As I repeatedly tell folks, don't let your fears get the best of you and don't dwell on them but so long.  Move on.  Fear can be a friend, but it can also turn into one of our worst enemies when it starts to become paralyzing.  We've got to keep clear heads and fear clouds them.

      You'll find you can take what you need to take and do what you need to do.  You'll find you're stronger than you ever thought.

      Look at it this way: this won't be the first nor last procedure you'll go through.  Sorry to tell you that, but they'll save your life.  Yours was caught early and that's in your favor.

      Take what your doctor says and then remember you can come here asap and check it out.

      All the best.

      Carol stage 3b

      Loading spinner
        lhaley
        Participant

        Mine was done in 98'. They let my husband come in with me and it was his hand that I got to squeeze. He kept making funny faces at me like I was killing his hand. Got me tickled and even through the pain I was making faces back . The Dr. saidhe had never had anyone laugh during the procedure.  I credit my husband for giving me laughter through out my journey.

        Yes, it does hurt and burn. However it's over before you know it and then there is no residual pain. Just a few minutes. Don't let it scare you. My surgery was immediately afterwards. I was in the basement of John Hopkins having the dye infected. The orderly couldn't find me to return me to surgery!  The nurses station kept calling asking why I wasn't up in OR.  My husband offered to bring me up but that was against the rules.  I was late for my own surgery! Node was benign.

        Good luck and take a deep breath.

        Linda

        Stage IV  since 06 stable

        I have multiple primaries, that particular mel was not the one that caused my issues!

        Loading spinner
        Rendergirl
        Participant

        Did you have a mole removed and get the injection into a still-healing incision site? That's why I'm afraid it's gonna hurt like hell…

        Loading spinner
        lhaley
        Participant

        I had a mole removed a year earlier and was told all was good. A new mole grew back and this time the pathology said melanoma so yes, the wound was fresh. The SNB was done as a double check measure.  While the SNB was painful, it wasn't nearly as painful as my last biopsy under the collar bone.  You just have to remember that it will be over quickly.  Maybe your Dr. could order some valium or ativan to help that day. 

        Let us know how it goes,

        Linda

        Loading spinner
        lhaley
        Participant

        I had a mole removed a year earlier and was told all was good. A new mole grew back and this time the pathology said melanoma so yes, the wound was fresh. The SNB was done as a double check measure.  While the SNB was painful, it wasn't nearly as painful as my last biopsy under the collar bone.  You just have to remember that it will be over quickly.  Maybe your Dr. could order some valium or ativan to help that day. 

        Let us know how it goes,

        Linda

        Loading spinner
        Ranisa
        Participant

        No valium if you are having anykind of surgery that day…..I was planning on it and the doc said "sorry, you can take one the night before".

        Loading spinner
        Ranisa
        Participant

        No valium if you are having anykind of surgery that day…..I was planning on it and the doc said "sorry, you can take one the night before".

        Loading spinner
        Rendergirl
        Participant

        Did you have a mole removed and get the injection into a still-healing incision site? That's why I'm afraid it's gonna hurt like hell…

        Loading spinner
        lhaley
        Participant

        Mine was done in 98'. They let my husband come in with me and it was his hand that I got to squeeze. He kept making funny faces at me like I was killing his hand. Got me tickled and even through the pain I was making faces back . The Dr. saidhe had never had anyone laugh during the procedure.  I credit my husband for giving me laughter through out my journey.

        Yes, it does hurt and burn. However it's over before you know it and then there is no residual pain. Just a few minutes. Don't let it scare you. My surgery was immediately afterwards. I was in the basement of John Hopkins having the dye infected. The orderly couldn't find me to return me to surgery!  The nurses station kept calling asking why I wasn't up in OR.  My husband offered to bring me up but that was against the rules.  I was late for my own surgery! Node was benign.

        Good luck and take a deep breath.

        Linda

        Stage IV  since 06 stable

        I have multiple primaries, that particular mel was not the one that caused my issues!

        Loading spinner
      Carol Taylor
      Participant

      I remember mine clearly from two years ago and I write this as someone who has a fairly high pain tolerance and as someone who, up till melanoma, absolutely hated all medical procedures, even getting my finger pricked.

      I was given three injections, right IN the place that was healing from where my mole was removed.  While one tech was doing that, another tech was there to let my squeeze the bejeezus out of his hand. 

      Each injection hurt like crap, pardon my french.  Big needle, right in a healing incision, blood squirted all over the place.  It's painful and not pretty.

      But, only the injections hurt.  I don't recall burning, but as you say, everyone's different.  And it's necessary.

      I learned from all these tests that I didn't know existed that I can take what they throw at me and these tests will work together to save my life.  Once the dye is in, there's really nothing left to the test to fear.  It's just those initial injections of dye.  You'll live through it, that's the main thing.

      As I repeatedly tell folks, don't let your fears get the best of you and don't dwell on them but so long.  Move on.  Fear can be a friend, but it can also turn into one of our worst enemies when it starts to become paralyzing.  We've got to keep clear heads and fear clouds them.

      You'll find you can take what you need to take and do what you need to do.  You'll find you're stronger than you ever thought.

      Look at it this way: this won't be the first nor last procedure you'll go through.  Sorry to tell you that, but they'll save your life.  Yours was caught early and that's in your favor.

      Take what your doctor says and then remember you can come here asap and check it out.

      All the best.

      Carol stage 3b

      Loading spinner
      RMcLegal
      Participant

      I've had two lymphocintigraphy scans.  I'm a world-class coward when it comes to this stuff, but both were very tolerable.  The injections do hurt (felt to me like several wasp stings and that's how the radiologist described it to me) but the pain passed very quickly once the injections were completed.

      These scans and the surgery led to a Stage IIIc diagnosis and biochemotherapy treatments back in 2003.  Today I'm healthy and showing no evidence of disease.  I've blogged about the lighter side of my long, strange trip at http://www.hotelmelanoma.blogspot.com.  Hang in there, and best wishes to you.

      Loading spinner
        Rendergirl
        Participant

        Thanks for your reply. I read some of your blog… I get the impression you have a tumor that hasn't been removed? The reason I'm scared is I had a mole removed and they are going to inject me in my still-healing incision. Did you have that?

        Loading spinner
        RMcLegal
        Participant

        Yes, the injections were right into the site where my primary melanoma tumor had already been removed and that spot was still sore.  It hurts but it's over quickly.  You can do it, and you really have to.

        I have a non-melanoma tumor (a nerve tissue tumor called a "schwannoma") that the docs discovered while looking for melanoma tumors.  Thank heavens it wasn't a melanoma tumor, just a bonus tumor that the docs have managed with surgery and radiation.

        Hang in there.

        Loading spinner
        RMcLegal
        Participant

        Yes, the injections were right into the site where my primary melanoma tumor had already been removed and that spot was still sore.  It hurts but it's over quickly.  You can do it, and you really have to.

        I have a non-melanoma tumor (a nerve tissue tumor called a "schwannoma") that the docs discovered while looking for melanoma tumors.  Thank heavens it wasn't a melanoma tumor, just a bonus tumor that the docs have managed with surgery and radiation.

        Hang in there.

        Loading spinner
        Rendergirl
        Participant

        Thanks for your reply. I read some of your blog… I get the impression you have a tumor that hasn't been removed? The reason I'm scared is I had a mole removed and they are going to inject me in my still-healing incision. Did you have that?

        Loading spinner
      RMcLegal
      Participant

      I've had two lymphocintigraphy scans.  I'm a world-class coward when it comes to this stuff, but both were very tolerable.  The injections do hurt (felt to me like several wasp stings and that's how the radiologist described it to me) but the pain passed very quickly once the injections were completed.

      These scans and the surgery led to a Stage IIIc diagnosis and biochemotherapy treatments back in 2003.  Today I'm healthy and showing no evidence of disease.  I've blogged about the lighter side of my long, strange trip at http://www.hotelmelanoma.blogspot.com.  Hang in there, and best wishes to you.

      Loading spinner
      AS123
      Participant

      I must have been one of the lucky ones, because mine did not hurt much at all. They injected it four times and it was on my lower back. Honestly, getting the IV in was more painful for me! And any pain you will feel will go away quickly so try not to worry about it! Good luck and keep us posted!

      Loading spinner
      AS123
      Participant

      I must have been one of the lucky ones, because mine did not hurt much at all. They injected it four times and it was on my lower back. Honestly, getting the IV in was more painful for me! And any pain you will feel will go away quickly so try not to worry about it! Good luck and keep us posted!

      Loading spinner
      Ranisa
      Participant

      Did it hurt when the numbed you up the first time to move the mole or melanoma?  Well, this is a bit worse.  I hate it when doctors say things like "you'll live"….I always want to ask "Is the pain going to be so bad that I am going to wish that I had died?"  For this….not even close but it does sting…badly.  I had 6 injections around my old mole area.  They spray numbing stuff on the area first to ease the pain.  All in all….you'll live and it is less painful then getting your finger slammed in the door…..or touching a hot pan on the stove…..and it is over realativly quick. 

      Loading spinner
      Ranisa
      Participant

      Did it hurt when the numbed you up the first time to move the mole or melanoma?  Well, this is a bit worse.  I hate it when doctors say things like "you'll live"….I always want to ask "Is the pain going to be so bad that I am going to wish that I had died?"  For this….not even close but it does sting…badly.  I had 6 injections around my old mole area.  They spray numbing stuff on the area first to ease the pain.  All in all….you'll live and it is less painful then getting your finger slammed in the door…..or touching a hot pan on the stove…..and it is over realativly quick. 

      Loading spinner
      alicia
      Participant

      Hi there so sorry you have just been diagnosed with melanoma.  Big Hug to you:)  I've had 3 melanoma primaries 2 of which were intermediate thickness.  My first melanoma lesion area was still fresh and bleeding at the time of the lymphoscintigraphy and I remember it feeling like a venemous wasp sting.  The Dr did 4 injections in the area of the lesion.  My second melanoma primary was thin so I didn't have a SNB.  My third primary I had lymphoscintigraphy done twice because the original dr that was gonna do my surgery felt my situation was complicated since the lesion drained to nodes in both groins and i already have surgery to my lt groin.  so he referred me to Vandy where I underwent another lymphoscintigraphy the day of surgery.  On my third primary the 1st lymphoscintigraphy test stung quit a bit because the tech said the volume of solution was too much in each syringe and she injected 4 in my back.  The second time at Vandy I had it done they used 6 smaller injections and it wasn't as bad.  I hope all is well for you.  Please keep us posted on how you are doing.  Much love and hugs:)

       

      Alicia B stage 3a 2006 11 mo of interferon w/ 3 primaries(most recent surgery jan 2011 stage 2 primary)

      Loading spinner
      alicia
      Participant

      Hi there so sorry you have just been diagnosed with melanoma.  Big Hug to you:)  I've had 3 melanoma primaries 2 of which were intermediate thickness.  My first melanoma lesion area was still fresh and bleeding at the time of the lymphoscintigraphy and I remember it feeling like a venemous wasp sting.  The Dr did 4 injections in the area of the lesion.  My second melanoma primary was thin so I didn't have a SNB.  My third primary I had lymphoscintigraphy done twice because the original dr that was gonna do my surgery felt my situation was complicated since the lesion drained to nodes in both groins and i already have surgery to my lt groin.  so he referred me to Vandy where I underwent another lymphoscintigraphy the day of surgery.  On my third primary the 1st lymphoscintigraphy test stung quit a bit because the tech said the volume of solution was too much in each syringe and she injected 4 in my back.  The second time at Vandy I had it done they used 6 smaller injections and it wasn't as bad.  I hope all is well for you.  Please keep us posted on how you are doing.  Much love and hugs:)

       

      Alicia B stage 3a 2006 11 mo of interferon w/ 3 primaries(most recent surgery jan 2011 stage 2 primary)

      Loading spinner
      Carol Taylor
      Participant

      I'm sure your surgeon told you, I hope he/she did!, but they have to do the injections in the incision because they have to be able to, as accurately as possible, trace the route any cancer cells would have taken to your lymph nodes, if any broke loose.  If any are in your nodes, they need to know which one(s) to remove.  So, there is a method to the madness of putting the injections directly in your incision.  It hurts so much because the skin is really tight and depending on how much flesh they removed, there is that much less to absorb the needle.

      In my case, the dye traced to the first sentinel, they removed two and went back later and removed the remaining 25.  I never understood why they just didn't take them all to begin with.  And I bring that up in case yours tracks to a node that they want to remove.  Ask what will happen if there is cancer in just one node, will they want to go back and get the rest.  If that's the case, ask if they'll just go ahead and get them all in one surgery.  That's my advice, someone else may have a different take and advice.  If they take any, you'll have a drainage tube put in and that will be in place if they go back for a second surgery, so why not do it all at once?

      More than you asked, and not what you asked, but you're having the procedure and your stage will change if they find cancer in even one node.  I want you to be prepared for good discussion.

      Carol

      Loading spinner
        Ranisa
        Participant

        I think that the complications for removal of a all of the nodes is much worse than just removing a few. 

        Loading spinner
        Ranisa
        Participant

        I think that the complications for removal of a all of the nodes is much worse than just removing a few. 

        Loading spinner
        Janner
        Participant

        The vast majority of the people who have a SNB have NEGATIVE sentinel nodes.  So why remove all the lymph nodes in an area if none have melanoma?  It's better to check the sentinel node first and then only remove the rest if there is melanoma.  They used to just remove all the nodes – but the percentages were so low with those who had disease that the SNB was developed!  The side effects from a LND can be significant and…. haven't necessarily been shown to improve survival.  (Let's just say that the LND can be controversial given who you talk to).  The whole point of the SNB was to avoid removing all the nodes in those that don't need it.

        Loading spinner
        Carol Taylor
        Participant

        See, that's the thing in my case I never understood.  They knew when they removed that first node there was melanoma in it so they went ahead and removed a second.  The second was negative, but they still went back and removed the remaining 25 "to be sure."  Which I was fine with because I wanted to be as sure as I could too.

        So, when they know there's cancer in that first node, and they're in there, why not go ahead and remove all instead of doing it in 2 surgeries?

        Loading spinner
        Carol Taylor
        Participant

        See, that's the thing in my case I never understood.  They knew when they removed that first node there was melanoma in it so they went ahead and removed a second.  The second was negative, but they still went back and removed the remaining 25 "to be sure."  Which I was fine with because I wanted to be as sure as I could too.

        So, when they know there's cancer in that first node, and they're in there, why not go ahead and remove all instead of doing it in 2 surgeries?

        Loading spinner
        Janner
        Participant

        The thing is, most times they don't know.  If the node is obviously black or has "extracapsular extension" (melanoma outside the node), then they could remove all the nodes and be pretty safe.  But the usual case is the node looks normal.  They can do a "frozen section" technique to analyze the node for a quick look while surgery is ongoing, but melanoma isn't the easiest to see in frozen sections – especially if there are microscopic amounts.  Melanoma shows up best when it is processed in parafin and specific stains are applied to see it.  That can't be done during the surgery session.  So it means removing the sentinel node(s), processing them via normal pathology, and THEN coming back to remove the nodes if there truly is melanoma present.  If your node was obviously melanoma during the surgery, then they certainly could have removed all the nodes then.  But truthfully, that's not the normal scenario.

        Loading spinner
        Janner
        Participant

        The thing is, most times they don't know.  If the node is obviously black or has "extracapsular extension" (melanoma outside the node), then they could remove all the nodes and be pretty safe.  But the usual case is the node looks normal.  They can do a "frozen section" technique to analyze the node for a quick look while surgery is ongoing, but melanoma isn't the easiest to see in frozen sections – especially if there are microscopic amounts.  Melanoma shows up best when it is processed in parafin and specific stains are applied to see it.  That can't be done during the surgery session.  So it means removing the sentinel node(s), processing them via normal pathology, and THEN coming back to remove the nodes if there truly is melanoma present.  If your node was obviously melanoma during the surgery, then they certainly could have removed all the nodes then.  But truthfully, that's not the normal scenario.

        Loading spinner
        Carol Taylor
        Participant

        Wow!  Janner, your knowledge is impressive!  I checked your profile, you've been at this awhile, far longer than me.  How are you now, if I amy ask?  Are you in the medical field or just have a knack for understanding all this? 

        Yeah, they knew about mine, I just didn't know enough to ask about getting them all versus getting a couple. I didn't know what conversations to have, which our friend who posted the original question will do well to get a handle on, and that's the converstaions to have.

        Loading spinner
        Carol Taylor
        Participant

        Wow!  Janner, your knowledge is impressive!  I checked your profile, you've been at this awhile, far longer than me.  How are you now, if I amy ask?  Are you in the medical field or just have a knack for understanding all this? 

        Yeah, they knew about mine, I just didn't know enough to ask about getting them all versus getting a couple. I didn't know what conversations to have, which our friend who posted the original question will do well to get a handle on, and that's the converstaions to have.

        Loading spinner
        Janner
        Participant

        I'm just a patient that got obsessive in researching at one stage, and found I had a knack for it, as you say.  I read, ask a lot of questions and just seem to process and remember the info.

        My adoptive father just advanced to stage III (dx stage IIA 5 years ago) and my adoptive mother just had a WLE for melanoma in situ last week.  So besides me, I have a vested interest for my family, also.

        Best wishes,

        Janner

        Loading spinner
        Janner
        Participant

        I'm just a patient that got obsessive in researching at one stage, and found I had a knack for it, as you say.  I read, ask a lot of questions and just seem to process and remember the info.

        My adoptive father just advanced to stage III (dx stage IIA 5 years ago) and my adoptive mother just had a WLE for melanoma in situ last week.  So besides me, I have a vested interest for my family, also.

        Best wishes,

        Janner

        Loading spinner
        Carol Taylor
        Participant

        Way off topic for our original poster, but I'd recommend you look at Janner's website, linked under her name.  I just took a look around and, well, it's a great job!  ots of good help there and organized well.

        Loading spinner
        Carol Taylor
        Participant

        Way off topic for our original poster, but I'd recommend you look at Janner's website, linked under her name.  I just took a look around and, well, it's a great job!  ots of good help there and organized well.

        Loading spinner
        Janner
        Participant

        The vast majority of the people who have a SNB have NEGATIVE sentinel nodes.  So why remove all the lymph nodes in an area if none have melanoma?  It's better to check the sentinel node first and then only remove the rest if there is melanoma.  They used to just remove all the nodes – but the percentages were so low with those who had disease that the SNB was developed!  The side effects from a LND can be significant and…. haven't necessarily been shown to improve survival.  (Let's just say that the LND can be controversial given who you talk to).  The whole point of the SNB was to avoid removing all the nodes in those that don't need it.

        Loading spinner
      Carol Taylor
      Participant

      I'm sure your surgeon told you, I hope he/she did!, but they have to do the injections in the incision because they have to be able to, as accurately as possible, trace the route any cancer cells would have taken to your lymph nodes, if any broke loose.  If any are in your nodes, they need to know which one(s) to remove.  So, there is a method to the madness of putting the injections directly in your incision.  It hurts so much because the skin is really tight and depending on how much flesh they removed, there is that much less to absorb the needle.

      In my case, the dye traced to the first sentinel, they removed two and went back later and removed the remaining 25.  I never understood why they just didn't take them all to begin with.  And I bring that up in case yours tracks to a node that they want to remove.  Ask what will happen if there is cancer in just one node, will they want to go back and get the rest.  If that's the case, ask if they'll just go ahead and get them all in one surgery.  That's my advice, someone else may have a different take and advice.  If they take any, you'll have a drainage tube put in and that will be in place if they go back for a second surgery, so why not do it all at once?

      More than you asked, and not what you asked, but you're having the procedure and your stage will change if they find cancer in even one node.  I want you to be prepared for good discussion.

      Carol

      Loading spinner
      Rendergirl
      Participant

      Hey everyone, first I want to thank you all for the replies. Even if your experience was bad (I'm so sorry) it helps me to prepare myself. But I was thinking, the incision where they took my initial mole is healing, and it doesn't hurt to press on it or touch it. So I was hoping if it doesn't hurt to press on it now… maybe the shots won't hurt that much. The lidocaine shots when they removed the mole were nothing. I know it probably sounds like I'm trying to bargain with fate, I just tend to make things into huge boogie monsters when they turn out to be small things. I kinda wish I could have this done right now and get it over with. It's scheduled for Wednesday, 3 days from now.

      The surgery is scheduled the day after. I'm not scared of being put to sleep, I'm scared of waking up and seeing where they cut me to take out my lymph node. I hope to god it's not my groin or neck. But even if it is my armpit, I'm scared of that hurting like hell.

      So many unknowns.Such fear. Even when the surgeries are over, then I have to wait for pathology. I'm thinking positive, I have a %60 chance of it not having spread to my lymph nodes. I'm concentrating on that. But it helps to know I have a place where I can ask questions and get support.

      Loading spinner
        Vermont_Donna
        Participant

        Hi,

        My procedure for the injection for the radioactive tracer was almost 5 years ago, and it was into my lower calf, on the side of my leg…I remember it hurting and burning a little bit…but it was not unbearable. The tracer went to my groin so that is where the SNB was done….I had about a 3 to 4 inch incision. You can look at my profile for more info on my melanoma journey if interested. I have had some complications along the way.- but right now I am NED after 4 infusions of Ipi (yervoy).

        Good luck!

        Vermont_Donna, stage 3a

        Loading spinner
        Vermont_Donna
        Participant

        Hi,

        My procedure for the injection for the radioactive tracer was almost 5 years ago, and it was into my lower calf, on the side of my leg…I remember it hurting and burning a little bit…but it was not unbearable. The tracer went to my groin so that is where the SNB was done….I had about a 3 to 4 inch incision. You can look at my profile for more info on my melanoma journey if interested. I have had some complications along the way.- but right now I am NED after 4 infusions of Ipi (yervoy).

        Good luck!

        Vermont_Donna, stage 3a

        Loading spinner
        Carol Taylor
        Participant

        Hi Rendergirl,

        Maybe I've missed it, but I can't find where your mole was removed.  The lymph node(s) they remove will probably be nearby.  If the mole was on your arm, they'll remove from under your armpit and not your groin, for example.

        Let's go with that scenario because that's the one I know.  Mole on upper left arm, nodes underneath removed in 2 surgeries…two the first time & remaining 25 the second.

        OK, they put a drainage tube in place after the first surgery and it stayed in through the second…even got upgraded to a slightly bigger tube!  I was styling…first rule, try to keep a semblence of a sense of humor no matter what, it will make this easier to get through. It was all stapled in place.

        I dreaded the pain and seeing it, too. Because of the drainage (the plastic tubing came from hole slightly to left of armpit and drained into a collection tube that was taped between my breasts), I had to buy ridiculously big shirts because I had to go braless and I didn't want that fact noticeable by the general population. Note: 2 and a half years later I wear a camisole with built in sportsbra because I still can't wear a regular bra (drawerful of different cuts) because of where they all hit that scar.  Something that may happen to you with clothing.

        And my armpit is still sunken in.  They don't remove individual nodes, they go in and remove the whole mass of tissue. Be prepared, since you want to know about pain, it might not be where you'd expect.  Me, my neck hurt like crazy and it wasn't touched.  What I learned in physical therapy is that during surgery they'll move you in numerous odd ways to do what they need to do.

        Physical therapy…you may need it to get movement back.  I needed it to get arm movement back aw well as to control the lymphedema that set in very quickly. Make sure you got to a therapist recommended by your doctor's staff so you'll get one that can handle what you need handled.

        Back to pain, for me there was more discomfort than actual pain and even that didn't last but so long. The worst discomfort came when either me or my husband changed the collection tubes. I found that went better if I was laying down than if I was sitting up.You'll feel a sensation when the new tube is attached and you'll feel it a bit more sitting up instead of laying down…or I did.

        For me, I really feared getting those staples removed and that drainage tube pulled out. That might be what you're already dreading too. I didn't believe them when they told me it wouldn't hurt and that I wouldn't feel a thing…I mean how could I not feel all that?  Right?

        While the doctor was talking to me he was removong the staples and I never knew it.  I swear (that's something we preachers take seriously!).  THEN while I was telling him how much I dreaded getting that tubing pulled out…he showed me the tubing in his hand!  It was out and I had no idea until he showed it to me!  I wouldn't have believed it to be possible if it hadn't happened to me.

        Bottom line, for me the needles to this procedure & PET/CT scan needles are where the pain comes in and it only lasts as long as the needle is in.

        BTW, how to gauge your skin for potential pain: how tight is the healing incision? How much flesh till you feel bone? Easy to touch isn't the rule of thumb.

        You'll do this! Consider the alternative!

        Grace and peace,

        Carol

        Loading spinner
        Carol Taylor
        Participant

        Hi Rendergirl,

        Maybe I've missed it, but I can't find where your mole was removed.  The lymph node(s) they remove will probably be nearby.  If the mole was on your arm, they'll remove from under your armpit and not your groin, for example.

        Let's go with that scenario because that's the one I know.  Mole on upper left arm, nodes underneath removed in 2 surgeries…two the first time & remaining 25 the second.

        OK, they put a drainage tube in place after the first surgery and it stayed in through the second…even got upgraded to a slightly bigger tube!  I was styling…first rule, try to keep a semblence of a sense of humor no matter what, it will make this easier to get through. It was all stapled in place.

        I dreaded the pain and seeing it, too. Because of the drainage (the plastic tubing came from hole slightly to left of armpit and drained into a collection tube that was taped between my breasts), I had to buy ridiculously big shirts because I had to go braless and I didn't want that fact noticeable by the general population. Note: 2 and a half years later I wear a camisole with built in sportsbra because I still can't wear a regular bra (drawerful of different cuts) because of where they all hit that scar.  Something that may happen to you with clothing.

        And my armpit is still sunken in.  They don't remove individual nodes, they go in and remove the whole mass of tissue. Be prepared, since you want to know about pain, it might not be where you'd expect.  Me, my neck hurt like crazy and it wasn't touched.  What I learned in physical therapy is that during surgery they'll move you in numerous odd ways to do what they need to do.

        Physical therapy…you may need it to get movement back.  I needed it to get arm movement back aw well as to control the lymphedema that set in very quickly. Make sure you got to a therapist recommended by your doctor's staff so you'll get one that can handle what you need handled.

        Back to pain, for me there was more discomfort than actual pain and even that didn't last but so long. The worst discomfort came when either me or my husband changed the collection tubes. I found that went better if I was laying down than if I was sitting up.You'll feel a sensation when the new tube is attached and you'll feel it a bit more sitting up instead of laying down…or I did.

        For me, I really feared getting those staples removed and that drainage tube pulled out. That might be what you're already dreading too. I didn't believe them when they told me it wouldn't hurt and that I wouldn't feel a thing…I mean how could I not feel all that?  Right?

        While the doctor was talking to me he was removong the staples and I never knew it.  I swear (that's something we preachers take seriously!).  THEN while I was telling him how much I dreaded getting that tubing pulled out…he showed me the tubing in his hand!  It was out and I had no idea until he showed it to me!  I wouldn't have believed it to be possible if it hadn't happened to me.

        Bottom line, for me the needles to this procedure & PET/CT scan needles are where the pain comes in and it only lasts as long as the needle is in.

        BTW, how to gauge your skin for potential pain: how tight is the healing incision? How much flesh till you feel bone? Easy to touch isn't the rule of thumb.

        You'll do this! Consider the alternative!

        Grace and peace,

        Carol

        Loading spinner
      Rendergirl
      Participant

      Hey everyone, first I want to thank you all for the replies. Even if your experience was bad (I'm so sorry) it helps me to prepare myself. But I was thinking, the incision where they took my initial mole is healing, and it doesn't hurt to press on it or touch it. So I was hoping if it doesn't hurt to press on it now… maybe the shots won't hurt that much. The lidocaine shots when they removed the mole were nothing. I know it probably sounds like I'm trying to bargain with fate, I just tend to make things into huge boogie monsters when they turn out to be small things. I kinda wish I could have this done right now and get it over with. It's scheduled for Wednesday, 3 days from now.

      The surgery is scheduled the day after. I'm not scared of being put to sleep, I'm scared of waking up and seeing where they cut me to take out my lymph node. I hope to god it's not my groin or neck. But even if it is my armpit, I'm scared of that hurting like hell.

      So many unknowns.Such fear. Even when the surgeries are over, then I have to wait for pathology. I'm thinking positive, I have a %60 chance of it not having spread to my lymph nodes. I'm concentrating on that. But it helps to know I have a place where I can ask questions and get support.

      Loading spinner
      premedy
      Participant

      its not bad at all. The pain I would say is like a 6 but it only lasts for 3 seconds.  When I had mine done they did 4 or 5 injections and each one hurt for like 3 seconds and then you won't notice anything different.

      Loading spinner
      premedy
      Participant

      its not bad at all. The pain I would say is like a 6 but it only lasts for 3 seconds.  When I had mine done they did 4 or 5 injections and each one hurt for like 3 seconds and then you won't notice anything different.

      Loading spinner
      jimjoeb
      Participant

      I had my lymphoscintigraphy this morning. Mine didn't hurt anymore than my monthly allergy shot. It may have been because the technician put lidocaine in with the radioactive material.

      I understand that I will have it again on the day of my surgery. I had it done in advance because the primary site (where the radioactive material is injecte) is very close to the likely sentinel nodes and my surgeon wanted to be sure not to miss one on surgery day.

      Loading spinner
      jimjoeb
      Participant

      I had my lymphoscintigraphy this morning. Mine didn't hurt anymore than my monthly allergy shot. It may have been because the technician put lidocaine in with the radioactive material.

      I understand that I will have it again on the day of my surgery. I had it done in advance because the primary site (where the radioactive material is injecte) is very close to the likely sentinel nodes and my surgeon wanted to be sure not to miss one on surgery day.

      Loading spinner
Viewing 17 reply threads
  • You must be logged in to reply to this topic.
About the MRF Patient Forum

The MRF Patient Forum is the oldest and largest online community of people affected by melanoma. It is designed to provide peer support and information to caregivers, patients, family and friends. There is no better place to discuss different parts of your journey with this cancer and find the friends and support resources to make that journey more bearable.

The information on the forum is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.