Wilma is a skin cancer specialist nurse, here to answer your questions about different...
Hi I’ve not posted for a long time, as I’ve been relatively well for a while . Following 2 sessions of Ippi/ Novo I had really bad reactions for about 2 years....all OK now ( 3 years since I was treated). Last scan I was told there were some very small changes, but this scan was told all was still stable, however there was another lump in my skin they wanted to do a biopsy on.
wish I’d asked the consultant at the time, but just really confused as to why do a biopsy, as my disease progressed to metatastic I never had another biopsy, so why now? Could they think it is another type of cancer and not melanoma, and help would be appreciated.
It is important to do the biopsy because it may be cells from your previous melanoma, it may be something completely different or (possibly) it is a different melanoma which would respond differently to treatment.
If it is something iffy, It would be best to get rid of it before it had the chance to spread and complicate things.
All the best
If it’s any consolation I was diagnosed with metastatic disease in July 2015, when it progressed to my ovary after being on Dabrafenib they didn’t biopsy they just changed treatment. I asked how would they know it’s melanoma, and not ovarian cancer, the reply was the treatment might not work if it’s not. Luckily Pembro was for me was great a complete responder.
When I was clear and off treatment for a year, there was an enlarged node showing on a scan they wanted to do surgery to remove and biopsy it, when I questioned if they knew it was melanoma and not an infection, they did a fine needle biopsy and when melanoma confirmed could start treatment again. They later took the node out 9 months later when it still wasn’t responding to Pembro. I’m still on Pembro but another node is enlarged they are planning surgery to remove and keep me on Pembro still.
There is nothing worse than questioning the actions they want to take it just goes round and round in your head doesn’t it. I’m counting myself lucky I suppose that I still have choices.
At the same time my lymph node came up the first time I also had a lump on my arm, the lump was a cyst they could tell that by the ultra sound I was having to guide the needle biopsy for my node, so they didn’t biopsy my arm.
I think you have to think it round and round until you feel happy with what they are doing. I had to have a chat with the Macmillan nurse who had been at the MDT to get the ins and outs of why surgery and not changing Pembro for targeted therapy.
My appointment was yesterday and the MDT is on Monday but I think I’m happy to go for surgery straight away this time rather than faff around, they will biopsy my node when it’s fully out and put it in a trial again. I’ve gone through thinking if Pembro isn’t working stop it, but they seem happy that it must be working everywhere else.
I hope you can talk things through maybe just to get to the place of they need to know this time so they can plan what to do, and that it doesn’t matter what went on previously. Once they know we can readjust and move forward.
I’m getting a bit fed up of melanoma, I don’t know about you, but then I remind myself that I’ve been exceptionally lucky, I could have so easily not been here still, but then I’m back to thinking surgery again argh, and well I end up sounding like muttley from wacky races.
Virtual hug to you, I’m feeling like I need one back as well today.
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Oh KTat home. Hugh hugs back. Don’t get me wrong I know I’m very lucky to be here and stable 3 years on. But I have many lumps appear that they assume are part of the metastatic melanoma. I just don’t know why they think this is different. Oh well I’ll find out on 3rd December when I get the results.
I do understand it’s better to deal with it as early as possible. Just a bit confused as to why biopsy this one and not all the others I’ve had. Still after 3 years you’d think I would be used to the uncertainty and the waiting. Thanks anyway xx
Thanks Jules, I think I feel a bit better after a moan and a virtual hug.
Have you had the biopsy already then Jules ?
No it is next Friday.....but I have the appointment booked for the results on 3rd December. I really wasn’t at all concerned when my consultant said, as there was no real change in the rest of me....but thinking on it now, there must be a reason my consultant hasn’t asked for a biopsy on another lumps that have developed. I am thinking maybe the consultant thinks there is a chance that for some reason this is not melanoma......I’ll let you know when I get the results.....thanks for listen x
I'm still laughing... "I’m getting a bit fed up of melanoma"... Classic!
You do cheer me up sometimes. Huge virtual hugs.
Don't wait for your ship to come in, swim out and find it!
Hi I am also fed up with melanoma. Sometimes it just gets you down My scan will now be late November. My mum is in a home and is playing up with dementia at the moment. I am going to escape to northern Tenerife tomorrow with my husband and will walk and rest up at times and read my books and escape this reality for a time .Sometimes it does get to you and I am usually a positive person.I wish everyone good luck on their journey with this .
Omg. Sometimes it is nice to say fk this....l know I should be grateful that I’m still here.....but being positive all the bloody time is such hard work.....it’s sometimes good to hear other get fed up too.....I am grateful, but sometimes I have bad days.....whh I’ve learn is ok too........just keep talking
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