New - Waiting for biopsy results -- Terrified :(

[Eternitye]

HI everyone. I am new here - but desperately need support My melanoma was in a mole on my back -- I rarely looked at it, so I didn't realize it had been changing or growing until suddenly I was like - oh my - that looks bigger.. So I went to a dermatologist, who said she would keep it "under observation" but didn't seem too concerned...

A few months later I went to a different dermo, and she said I should remove it -- mainly for 'cosmetic reasons'.. so I did.. and then the clinic called telling me I needed to *urgently* pick up the results. They wouldn't say anymore than that, so when I picked the results up it was just me staring at the sheet of paper, uncomprehending. I knew "malignant melanoma" was bad.. but I had no idea how bad. I had to google what "1.5mm Breslow" meant. And basically everything about the results, as they were just handed to me by a receptionist...

I live in Europe, and I just feel so FRUSTRATED by the system here.. first, that dermatologist who didn't think it was worth checking the mole I had signaled more thoroughly, second - if it hadn't been for my parents "connections" I wouldn't have even gotten in to see an oncologist for god knows how long..

So, this was all happening in July, and by August I had had my WLE and SLN biopsy.. everything was clear - margins and the three nodes they took out. I thought I had this behind me..

Unfortunately, going to my three month 'routine' check - the radiologists identified a suspect, swollen lymph node in the same armpit as I had had the SLNs taken out.. The oncologist is 'majorly concerned' , and as the FNA came back inconclusive, I am having a surgical excision/biopsy of the suspect node tomorrow.

I AM PETRIFIED. I am so so so so SCARED. I had no idea the node was swollen or enlarged, and not it is ALL I can feel. I am constantly thinking about it / feeling it. I'm also terrified that because I'm not in the US I won't have access to clinical trials/the best therapies/etc.. I'm panicked that I'll just be.. left for dead.

I really don't know how to handle this. I know I need to wait for the biopsy results, but how can I live my day to day life in the meantime? I also had a trip to Morocco planned with a friend mid-March.. the results won't be back until mid-March.. part of me thinks maybe I shouldn't go, however the other part of me doesn't want to cancel, lose all the money I already paid, and put my life on hold.. it would be a few days difference in any case.

I am so lost, so panicked, so confused.. Thank you to anyone who had the patience to read all of this so far.

[Robynfine]

Good morning from the US! Wow! What a story you have and it is scary.

First off, you need a PET scan. I would demand it. You need to see if this has traveled anywhere else. Second, I know nothing about care in Europe, so I can’t advise on that. Third, you need to be your own advocate and just be demanding!

The waiting is the hardest. I know your mind is jumping All over the place! Go to Morocco and try your hardest to have a good time. Easier said than done. I know. But if the results come back Melanoma, you need to be on top of it! It spreads fast.

I am stage 4 but I have had successful treatment in the US. Do you have access to what is being prescribed now for Melanoma? There are some really big advances and the ones that are out there are very effective.

I don’t know if I have helped, but I wish you success! Best of luck and lots of hugs.

Robyn

[Eternitye in reply to Robynfine]

Thank you, Robyn, for your reply! I have been told that I should demand the PET scan, but the doctor who did my surgery seems really really reluctant to send me for it until the biopsy comes back.. I have a lead on the best clinic in the country which supposedly has access to the best treatments - I specifically asked if I should be looking outside of my country for the best care, and was told that wouldn't be necessary, but I will be seeking a second and possibly third opinion. At this point I am having a lot of trouble trusting the doctors, though - which makes things harder.

I know the only thing I can really do right now is wait for the results, and they will also concurrently check for the BRAF mutation, which I know is somehow relevant for further decisions - but I cannot say it is easy. I think I will try to look for some positive, uplifting movies or documentaries on the importance of a positive attitude in the meantime, however I'm finding it really, really difficult to think positively right now.

Thank you again for responding, and for reiterating the need for a PET scan... I will do my best to fight for it, or get it done privately if need be. Take care!! And best wishes to you!

[TashSan in reply to Eternitye]

Hi Honey, it is all really very scary at the beginning, the doctors don’t tell you much, you’re in and out of appointments and none the wiser, it’s really really hard to do but you need to try and not think about the future and take one day/test at a time. There is nothing you can do about the result, you’re only going to make yourself sick, however I wasn’t able to do this without the assistance of anti anxiety medication from my GP. You still have those thoughts, but they in no way take you into the darkness like they would without the medication. My sister had an ulcerated Melanoma removed (extremely high risk) and her first PET scan came back all clear. But for a week beforehand we were preparing for the worst, and we were all a blubbering mess. In the end it turned out for the better, so all that stress was for nothing. Here to chat whenever you need to. Xxxx

[Eternitye in reply to TashSan]

Hi TashSan - thank you for your reply! I am managing the stress now, as I went back to work and somehow this really helps (thinking about other things, kinda pushing it out of my mind..) There is nothing I can do really, so I just have to wait.. Probably once I get the results I might be a blubbering mess (as you said) once again.. but until then I just need to function. Thank you again!

[mnimz]

I saw your story and wanted to reach out. I have been on a similar journey. Originally diagnosed with melanoma in 2011 at which time was told if it turned to metastatic, that there currently aren't any options. Fast forward to 2016 and at one of my scans they found spots on my lungs. After biopsy it was determined it was metastatic melanoma, however there were treatments that were showing good results. I've been doing Keytruda for the past year and a half and after the first treatment the cancer was gone! New results are showing patients who react positively to keytruda do not need to continue the treatment for the rest of life as originally thought. As of today, October should be my last treatment! I write this to let you know there is hope, it will be a long journey but push thru. Best of luck to you!

[strawberryjam in reply to mnimz]

So happy to hear this! Best of health to you.

[Eternitye in reply to mnimz]

Thank you mnimz!! It's great to read that you are doing well and that there is a treatment which has worked for you.

I just found out that the lymph node which they removed indeed is positive for melanoma - which was devastating. They removed a few other surrounding nodes and none were positive, and the one which was it seems it hasn't spread outside the node (no extracapular spread) but still... I have some CT scans and ultrasounds lined up and then probably we will set the date for the lymphadaectomy (probably spelled that wrong).. which really scares me.

I can't help but think of worst-case scenarios. It is awful to have to deal with this, I hope I can find some strength within me

[blangen09]

I too saw this and just had to reach out. I was diagnosed with stage 4 a year yesterday. I know that this is VERY scary, and people’s reaction to it can make you even more scared. It is serious, but the good news is that there are very effective treatments available and the world of melanoma treatment has changed drastically over the last 5 or 6 years. I started treatment April 20th 2017 and within a week we started seeing my tumors shrink, and I was declared NED by October. I just had my last treatment two weeks ago and my doctors are saying that the majority of people who respond to treatment have not seen recurrences. Of course they don’t have any long term data yet so this is based on roughly 5 years of data. But there’s hope! Of course, I wish you didn’t have to go through this at all, please do take good care of yourself emotionally and physically during this time.

xoxo

[Eternitye in reply to blangen09]

Hi blangen - THANK YOU for your response. It really helps to hear from others who are going through this.. I am trying to hope for the best and keep in mind the advances i treatment now available - but as I'm still pre-staging and the CT scans it's all just one giant unknown at this point every twinge, pain, or weird feeling in my body I am imagining is tumors.. it's friggin' exhausting!!

For now I am trying to focus on the day-to-day, keep up with my exercise and nutrition as well as keep up with friends.. just trying to live normally (in my head I complete the sentence with "while I can"). Luckily I quickly reached out to a Psychooncologist nearby and I have a really good feeling about her, so I am meeting her tomorrow and will try to deal with the feelings and use any tools she can provide to help my mental state. ARGH - it's so frustrating! Because I don't "feel" sick....

How was the treatment, if you don't mind me asking? Did you have the BRAF mutation? Was it hard on you, physically? Thanks again for reaching out It really helps and means a lot! Best wishes to you!

[blangen09 in reply to Eternitye]

Yes, being diagnosed with a serious disease can make you obsess over EVERY LITTLE ache and pain. It’s rough! I’m glad you have found a good therapist, the emotional piece is key and reasearch actually shows that people who have a good support group have better outcomes. If you are interested in any alternative supports there’s a book I found very helpful and HOPEFUL, titled Radical Remission.

As for treatment, everyone responds differently of course, but I have a few weeks that were really rough but other than that it was relatively easy in comparison to other treatments (from what I’ve heard). My doctors and I decided to only do two infusions of the combo because the side effects got pretty bad after the second infusion, but I had such a strong immune response (hence the nasty side effects) that they felt that I didn’t need the other two combo infusions. And they were right! I suspect that as they continue using these drugs they will start to cut back on the amount they are using. After they two infusions, they moved me on to just the opdivo infusion which I continued for 8 months and had no real side effects from. I just had my 3rd round of clear scans today and everything is looking good. And yes, I also had the BRAF mutation, I heard that 75 percent of young melanoma patients have this mutation. Weird, huh? It really makes you wonder what in the heck is going on, huh?

I do hope you are holding up and hanging in. Feel free to reach out any time 😊

[Eternitye in reply to blangen09]

Thanks for the recommendation! I will be sure to check it out. I love reading, so the more books the better The title is intriguing - I once read a book that impacted me called Radical Acceptance, so Radical Remission should be good, too

I don't have the BRAF mutation - go figure - so whatever 'extra' treatment there is for ppl with the mutation won't be helpful for me. I am waiting for the CT results for now but the good news (semi good news) is that the ultrasound I had yesterday did not show any other pathological nodes.. doesn't mean they are clear, but at least there's no OBVIOUS diseased one. I also called the lab who did the report on my infected node and they are going to re-examine it to check the size of the actual metastasis. There is a professor here in my country who is THE melanoma specialist apparently, so I wrote to him and he called and he hneeded that information to help advise next steps. It gives me hope, as I know he leads or is involved in most of the clinical trials available here - trying to keep all my options open at this point.

Thanks again for your reply I hope you remain NED forever and I hope I get to that position as well !

[Mklittleton in reply to blangen09]

You give me hope! I was just diagnosed Feb 22 with sarge 3 1A melanoma in 1 lymph node. I'm on 3 month appts with labs and ultrasounds for the first year. Scared yes....but I have faith all will be ok. Thankful you are still healthy too.

[blangen09 in reply to Mklittleton]

I’m sorry to hear this, are you doing immunotherapy? And yes, there’s a lot of hope! And yes again, I’m still doing well and just received another set of clear scan results. Hang in there and feel free to reach out any time!

[Mklittleton in reply to blangen09]

I had a bone scan and ct scans all clear, I know all is good because I work at the hospital where I had my tests performed. Our techs are good!! The Dr feels since it was a microscopic cluster in 1 node that doing ultrasound and labs every 3 months are the way to go.

I'm just scared of the waiting. I had to wait a month for my pathology results and thought I was going to go insane. I have 2 kids 13 and 10.

Thank you for giving me hope! I'm a prayer so I believe God is in control, I just have to give it to him!