› Forums › General Melanoma Community › Was my doctor wrong?
- This topic has 28 replies, 11 voices, and was last updated 12 years, 8 months ago by
LynnLuc.
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- August 18, 2011 at 4:36 am
Hello,
Hello,
I was diagnosed with melanoma just over a year ago. In spite of everything I read here and from people in this wonderful place who responded, I never did get a stage for my melanoma. The derm did what I assume was a wide excision (which caused a non-cancer related autoimmune reponse) and that was that. She told me the cancer was only 0.9 mm so I didn't need the sentinel node biopsy even though I asked for it. She also told me that the tissue removed during surgery came back 100% cancer-free. The original margins from the scoop were clear as well. I finally returned to mostly normal life at the beginning of this year.
Well, just over a month ago I noticed a large lump in my groin area on the same leg where my melanoma had appeared on my thigh. It showed up almost overnight. I saw my doctor (derm) who told me not to worry and that I had injured the tendon doing some heavy hiking. After a month, I had another doctor examine me who referred me for an ultrasound and bloodwork. The bloodwork came back fine (whatever that means) but the ultrasound report confirmed a 5 cm lymph node with the conclusion "highly suggestive of metastatic lymphodenopathy". I collapsed at the news. How could this have happened? I'm going in for an ultrasound guided biopsy tomorrow…praying it is all just a mistake. But, I'm not really thinking the odds are good for it being something other than cancer.
Assuming the test confirms cancer…what do I do next? The second doctor who referred me for the ultrasound and now biopsy basically shook my hand, said he was sorry, and wished me the best. Okay, but what do I do after the biopsy? Do I go to an oncologist? Am I likely to have to start chemotherapy? If my blood work was clear, is that a good sign that the cancer is limited to just this lymph node? Or maybe it isn't cancer after all?
I'm only 39…just a couple of weeks from my 40th actually. I recently starting seeing a man who I think could finally be "the one" and now this. Scared, angry, confused and devastated. Any feedback, advice, or any helpful words are so greatly appreciated. I'm not feeling a lot of support from or faith in the doctors I've seen so far, so this site may really be a God-send for me.
Thank you,
Jax
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- August 18, 2011 at 4:55 am
Jax,
I'm sorry you've had to find us but hopefully we can help. I looked at your profile but couldn't tell where you are from? That information would be helpful.
Standard protocal for when your primary was removed was followed as long as the original lesion was not ulcerated. A SNB is done at 1.0 mm unless there is ulceration or possibly a high miotic rate. Even if an SNB had been done that doesn't mean that anything would have shown there.
You can't deal with the past, you need to now deal with the present. You need to have the area biopsied. This can be done with a Fine needle biopsy or they can excise it. If it comes back metastic then you need to have a PET scan to see if this has gone anywhere else. If it is metastic melanoma then if you live near a melanoma specialist you will get the best care. There are many new options out there and regular oncologists can't always keep up.
First things first, You have to find out what the mass is before the next step can be planned. Personally I get upset when a Dr tells me they are sorry. I've been stage IV now for over 5 years. I plan on being here for a long time. Surround yourself with physicians that have knowledge of the disease and can help you attack this problem.
Make sure to ask for copies of all biopsy results. Post them and people will help you understand. Mine came back 27 years after my original wide excision. With melanoma there are no promises. Look to the future, not to the past.
Linda
Stage IV since 06 , NED (no evidence of disease) for almost 3 months
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- August 18, 2011 at 5:14 am
Thank you for the response, Linda. I'm in Southern California and hope to be able to find a melanoma specialist, as you recommend. The biopsy will be performed tomorrow afternoon…it is a needle biopsy. I like the sound of "fine needle" though…smaller is better in my book! You wrote "if it comes back metastatic"…could it come back as cancer but not be metastatic? Pardon my ignorance…my family has been mostly spared the various cancers. And thank you for defining "NED"…I've been wondering as I read through other posts. I like NED. 🙂
I will work on my forward thinking. Having more knowledge will help not only with more positive thoughts but also with letting go of what I can't control.
Jax
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- August 18, 2011 at 8:26 am
Jax, sorry to hear that you are having this trouble with your docs. Linda is right you have to focus on the present so you can then focus on the future not tue past. And if you ask me….Linda is one of the best people to ask on here she was/is so helpful to me. If she doesn’t know the answer she will look it up. I, like you, did not know any of these terms and that made it very hard to understand what is going on. Linda, among others here, are great wih all that. Good luck tomorrow and keep us all posted!-Kim
Diagnosd June 1st, 2011….. WLE & SNB on August 5th….NED since August 5th, 2011. -
- August 18, 2011 at 8:26 am
Jax, sorry to hear that you are having this trouble with your docs. Linda is right you have to focus on the present so you can then focus on the future not tue past. And if you ask me….Linda is one of the best people to ask on here she was/is so helpful to me. If she doesn’t know the answer she will look it up. I, like you, did not know any of these terms and that made it very hard to understand what is going on. Linda, among others here, are great wih all that. Good luck tomorrow and keep us all posted!-Kim
Diagnosd June 1st, 2011….. WLE & SNB on August 5th….NED since August 5th, 2011. -
- August 18, 2011 at 12:08 pm
Thanks Kim. It's just through too many years of experience that I've learned all of this….
Jax, If it starts at one place and comes back another then it would have metastic cells. That's when the cells have traveled. Once it has metasticized that is then the technical name for it. But, there is a chance that it will come back as something else. A lipoma or even a hematoma, those are not cancerous.
They will take enough tissue sample to get several slides worth. It stings a bit but I would not put it under the classification of hurting! If they do not have conclusive information, meaning that what they got is clean, then you have to decide if you want the area excised. My last lump did not show up on the PET, the fna was clear, then they excised – ended up being fatty tissue. With my history though they needed to either remove or treat and not wait around to see what developed.
You won't have the answers today. They might have a good idea but most Dr will not say anything until tested. Many say that melanoma tumors are black. Mine have never been. Some have been pink and others a gray/tan color so don't try and second guess if they do show it to you.
If you do get the results that it's melanoma start another heading with the area you are living in and ask for suggestions of Drs. I'm from the south so I can't help you.
Good luck today,
Linda
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- August 18, 2011 at 12:08 pm
Thanks Kim. It's just through too many years of experience that I've learned all of this….
Jax, If it starts at one place and comes back another then it would have metastic cells. That's when the cells have traveled. Once it has metasticized that is then the technical name for it. But, there is a chance that it will come back as something else. A lipoma or even a hematoma, those are not cancerous.
They will take enough tissue sample to get several slides worth. It stings a bit but I would not put it under the classification of hurting! If they do not have conclusive information, meaning that what they got is clean, then you have to decide if you want the area excised. My last lump did not show up on the PET, the fna was clear, then they excised – ended up being fatty tissue. With my history though they needed to either remove or treat and not wait around to see what developed.
You won't have the answers today. They might have a good idea but most Dr will not say anything until tested. Many say that melanoma tumors are black. Mine have never been. Some have been pink and others a gray/tan color so don't try and second guess if they do show it to you.
If you do get the results that it's melanoma start another heading with the area you are living in and ask for suggestions of Drs. I'm from the south so I can't help you.
Good luck today,
Linda
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- August 18, 2011 at 2:07 pm
Jax:
You mention you are looking for a melanoma expert in your area. I am not sure where in southern CA you are, but here are a few suggestions. In Los Angeles, Toni Ribas at UCLA is very good, as are the folks at the Angeles Clinic–Steve O'Day and Omid Hamid. In San Diego, Greg Daniels comes highly recommended. I don't know him, but trust the people who speak well of him. All are medical oncologists.
I am sure there are others, but this might be a place to start.
Tim–MRF
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- August 18, 2011 at 2:07 pm
Jax:
You mention you are looking for a melanoma expert in your area. I am not sure where in southern CA you are, but here are a few suggestions. In Los Angeles, Toni Ribas at UCLA is very good, as are the folks at the Angeles Clinic–Steve O'Day and Omid Hamid. In San Diego, Greg Daniels comes highly recommended. I don't know him, but trust the people who speak well of him. All are medical oncologists.
I am sure there are others, but this might be a place to start.
Tim–MRF
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- August 18, 2011 at 5:14 am
Thank you for the response, Linda. I'm in Southern California and hope to be able to find a melanoma specialist, as you recommend. The biopsy will be performed tomorrow afternoon…it is a needle biopsy. I like the sound of "fine needle" though…smaller is better in my book! You wrote "if it comes back metastatic"…could it come back as cancer but not be metastatic? Pardon my ignorance…my family has been mostly spared the various cancers. And thank you for defining "NED"…I've been wondering as I read through other posts. I like NED. 🙂
I will work on my forward thinking. Having more knowledge will help not only with more positive thoughts but also with letting go of what I can't control.
Jax
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- August 18, 2011 at 4:55 am
Jax,
I'm sorry you've had to find us but hopefully we can help. I looked at your profile but couldn't tell where you are from? That information would be helpful.
Standard protocal for when your primary was removed was followed as long as the original lesion was not ulcerated. A SNB is done at 1.0 mm unless there is ulceration or possibly a high miotic rate. Even if an SNB had been done that doesn't mean that anything would have shown there.
You can't deal with the past, you need to now deal with the present. You need to have the area biopsied. This can be done with a Fine needle biopsy or they can excise it. If it comes back metastic then you need to have a PET scan to see if this has gone anywhere else. If it is metastic melanoma then if you live near a melanoma specialist you will get the best care. There are many new options out there and regular oncologists can't always keep up.
First things first, You have to find out what the mass is before the next step can be planned. Personally I get upset when a Dr tells me they are sorry. I've been stage IV now for over 5 years. I plan on being here for a long time. Surround yourself with physicians that have knowledge of the disease and can help you attack this problem.
Make sure to ask for copies of all biopsy results. Post them and people will help you understand. Mine came back 27 years after my original wide excision. With melanoma there are no promises. Look to the future, not to the past.
Linda
Stage IV since 06 , NED (no evidence of disease) for almost 3 months
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- August 18, 2011 at 10:31 am
Hi Jax,
I'm new to this stuff myself (having just been diagnosed in July), but wanted to tell you that I've added you to my list of good, positive thoughts and prayers as I've added everyone here. You'll find lots of support and great answers to questions from people who've been there.
Will keep you in my thoughts and prayers for a good result tomorrow. But if the result isn't what you hope for, don't despair. As I've learned since I came here last week, there IS hope!
Take care!
Donna
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- August 18, 2011 at 10:31 am
Hi Jax,
I'm new to this stuff myself (having just been diagnosed in July), but wanted to tell you that I've added you to my list of good, positive thoughts and prayers as I've added everyone here. You'll find lots of support and great answers to questions from people who've been there.
Will keep you in my thoughts and prayers for a good result tomorrow. But if the result isn't what you hope for, don't despair. As I've learned since I came here last week, there IS hope!
Take care!
Donna
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- August 18, 2011 at 2:50 pm
Hi Jax,
So sorry you are going through this. You need an oncologist, preferrably a Melanoma specialist. We found that while the dermatologis and surgeons meant well, they did not understand how melanoma works. There are many options for you, but you need to be in the hands of someone who knows what they are. Last bit of advice, you are your best advocate. If you aren't feeling right about something your doctor says, don't accept it. If your doctor won't do what you want, find someone who will.
Best of luck to you!
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- August 18, 2011 at 2:50 pm
Hi Jax,
So sorry you are going through this. You need an oncologist, preferrably a Melanoma specialist. We found that while the dermatologis and surgeons meant well, they did not understand how melanoma works. There are many options for you, but you need to be in the hands of someone who knows what they are. Last bit of advice, you are your best advocate. If you aren't feeling right about something your doctor says, don't accept it. If your doctor won't do what you want, find someone who will.
Best of luck to you!
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- August 18, 2011 at 3:12 pm
Thank you for all of the replies. It was nice to wake up to your words this morning. I haven't shared with my family and friends yet (except for one) since I don't have a final answer yet. I don't want them to worry just in case, by some miracle, this is something else.
I have a few hours until I have to be at the hospital. Planning to get some housework done this morning. Worried about my living situation since I rent a second-floor apartment. Crazy enough…I'm in the process of trying to buy a house too. Not sure if I should let this stop or even slow me down. I am a fighter…just need to get my fight going!
I live in Rancho Cucamonga…so I will have to travel a bit to a find a melanoma specialist, but I am fortunate to be close enough to LA and Orange County to have options.
Jax
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- August 19, 2011 at 2:11 am
Hi Jax,
Since you live in Rancho C, you might want to investigate Loma Linda University Medical Center since it has a premier cancer center and is close to you!
http://lomalindahealth.org/medical-center/our-services/cancer-center/doctors-and-staff/melonma.page?
Take care! Cristy, Stage IV
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- August 19, 2011 at 2:11 am
Hi Jax,
Since you live in Rancho C, you might want to investigate Loma Linda University Medical Center since it has a premier cancer center and is close to you!
http://lomalindahealth.org/medical-center/our-services/cancer-center/doctors-and-staff/melonma.page?
Take care! Cristy, Stage IV
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- August 18, 2011 at 3:12 pm
Thank you for all of the replies. It was nice to wake up to your words this morning. I haven't shared with my family and friends yet (except for one) since I don't have a final answer yet. I don't want them to worry just in case, by some miracle, this is something else.
I have a few hours until I have to be at the hospital. Planning to get some housework done this morning. Worried about my living situation since I rent a second-floor apartment. Crazy enough…I'm in the process of trying to buy a house too. Not sure if I should let this stop or even slow me down. I am a fighter…just need to get my fight going!
I live in Rancho Cucamonga…so I will have to travel a bit to a find a melanoma specialist, but I am fortunate to be close enough to LA and Orange County to have options.
Jax
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- August 18, 2011 at 4:14 pm
You are in my thoughts today Jax. I hope all goes well for you…good results…and please try not to stress!
Your story sounds so much like mine. I had a spot on my leg back in '04 removed and also had the SNB at the time which everything came back clear. Scans and bloodwork once a year came back clear. I was seeing an Oncologist. Fast forward to the fall of 2010. Scan in Sept. came back clear. In November, I felt a hard lump in my groin area and went to the oncologist. Biopsy done and next thing I knew I was Stage IV with mets to the liver and lungs. WHAT?!? (Found out about a month ago the scans were NOT checking the lymph nodes…only the abdomen and chest area.) He referrerd me to a melanoma specialist after telling me I had "about a year". Whatever you do find yourself a specialist. After many months of treatment I am awaiting the next scan to find out if I am possibly in complete remission (per my Dr.). Hang in there. I don't post much here because there are so many others that are so eloquent and knowledgable I am still learning from them : ).
Karin
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- August 18, 2011 at 4:14 pm
You are in my thoughts today Jax. I hope all goes well for you…good results…and please try not to stress!
Your story sounds so much like mine. I had a spot on my leg back in '04 removed and also had the SNB at the time which everything came back clear. Scans and bloodwork once a year came back clear. I was seeing an Oncologist. Fast forward to the fall of 2010. Scan in Sept. came back clear. In November, I felt a hard lump in my groin area and went to the oncologist. Biopsy done and next thing I knew I was Stage IV with mets to the liver and lungs. WHAT?!? (Found out about a month ago the scans were NOT checking the lymph nodes…only the abdomen and chest area.) He referrerd me to a melanoma specialist after telling me I had "about a year". Whatever you do find yourself a specialist. After many months of treatment I am awaiting the next scan to find out if I am possibly in complete remission (per my Dr.). Hang in there. I don't post much here because there are so many others that are so eloquent and knowledgable I am still learning from them : ).
Karin
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- August 19, 2011 at 1:21 am
Some days with melanoma ,you are the pigeon, other days you are the statue; shower and move on.
All the posters have given you solid counsel; breathe deep and work the problem.
And do remember, 40 is 19 with 21 years of experience.
Cheers,
Charlie S
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- August 19, 2011 at 1:21 am
Some days with melanoma ,you are the pigeon, other days you are the statue; shower and move on.
All the posters have given you solid counsel; breathe deep and work the problem.
And do remember, 40 is 19 with 21 years of experience.
Cheers,
Charlie S
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- August 19, 2011 at 12:49 pm
Hi all,
I had my biopsy done yesterday. Results should come on Monday afternoon. The process of the biopsy wasn't that bad except for the very end. The radiologist was amazing…I didn't even feel the lidocaine injection. He brought the pathologists into the room to examine the samples as he took them. He explained this would ensure they had the samples they needed and would avoid the potential for me having to go through it again. The pathologist asked for one more "meaty" sample, so he went back in. While trying to get the best possible sample, he touched a nerve. Oh my goodness!!! I'm still feeling it this morning. But, I have to say that the experience wasn't all that bad and would've been actually easy if not for the unfortunate shot of pain.
I will update the results as soon as I am able to on Monday. The mass is definitelty vascular, which is a bit scary. But, I'm off to work this morning. Life goes on!!!
Jacki
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- August 19, 2011 at 12:49 pm
Hi all,
I had my biopsy done yesterday. Results should come on Monday afternoon. The process of the biopsy wasn't that bad except for the very end. The radiologist was amazing…I didn't even feel the lidocaine injection. He brought the pathologists into the room to examine the samples as he took them. He explained this would ensure they had the samples they needed and would avoid the potential for me having to go through it again. The pathologist asked for one more "meaty" sample, so he went back in. While trying to get the best possible sample, he touched a nerve. Oh my goodness!!! I'm still feeling it this morning. But, I have to say that the experience wasn't all that bad and would've been actually easy if not for the unfortunate shot of pain.
I will update the results as soon as I am able to on Monday. The mass is definitelty vascular, which is a bit scary. But, I'm off to work this morning. Life goes on!!!
Jacki
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- August 20, 2011 at 5:37 am
I am sorry you have been diagnosed with melanoma. Every time I went in and had a biopsy/ and surgery they finished cutting they said the margins were clear…I am now stage 4 but thankfully I am now NED since March 2010. The only stage I was ever given was stage 4. Somehow they never thought to tell me when I was 1, 2 or 3…
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- August 20, 2011 at 5:37 am
I am sorry you have been diagnosed with melanoma. Every time I went in and had a biopsy/ and surgery they finished cutting they said the margins were clear…I am now stage 4 but thankfully I am now NED since March 2010. The only stage I was ever given was stage 4. Somehow they never thought to tell me when I was 1, 2 or 3…
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