› Forums › Cutaneous Melanoma Community › Dazed & confused but mostly scared
- This topic has 21 replies, 4 voices, and was last updated 2 years, 6 months ago by Linny.
52yo male, good health other than this!
- September 10, 2020 at 6:31 pm
Biopsy from mole in belly button returned malignant melanoma in early August 2020. Specifics:
Breslow thickness: at least 0.9mm
Ulceration: Not identified
Mitotic rate: 0 per square mm
Margins: present at margins
Lymphovascular Invasion: Not identified
Neurotropism: Not Identified
Regression: Not identified
Pathologic stage: PT1b
2 weeks later I had a WLE surgery to remove belly button and melanoma, also a SLNB in groin area at same time, results:
A.Benign sentinel lymph node – negative for tumor
B. Malignant melanoma:
Brelsow depth: 2.2mm
Clark’s level: IV
Host repsonse: brisk
Vasucular space invasion: Absent
Perineural invasion: absent
Mitotic rate: 0 per square mm
Regression: Not identified
Surgical margins: Not involved
Had a full body PET scan 2 weeks later (last Wednesday) and results showed normal – no metastais, no cancer identified anywhere
So right now I am at stage IIb.
Met with oncologist a week ago today which was a blur for the most part but he set up checkups with him every 3 months for bloodwork and scans (probably CT or ultrasound – he wasn’t clear on this -of abdominal regions every 6 months).
He also mentioned a clinical trial in a nearby city of an immunotherapy drug ( Opdivo, I think?) used in stage III and IV for a preventative treatment in I and II. I meet with the Dr. in charge of that at the end of the month to learn more.
Right now, only a week after meeting with oncologist I feel like I should be elated at results of SLNB and PET scan, but I oscillate day to day from joy to being totally scared. The last 6 weeks have been the most terrifying of my life. My wife has been a rock through this but I know she wants me to focus on each day and not on my fear of recurrence, which has kept me up more than a few nights the past week.
I already had checkups at a dermatologist since my early 20’s twice a year but somehow this one got past him – he already did a biopsy on it in 2016 and it was all good then so I thought I never had to worry about it again – wrong! I had to point it out to him earlier in the summer when it was bothering me as it didn’t feel right.
I am covered in moles and have had many biopsies taken before with no melanoma until this one, so I am scared scared scared. Should I be doing more? I thought about going to 2 different dermatologists. I don’t know how to function at times during the day. I know I am looking for some optimistic assessment or statistic but I know nothing is a guarantee. I just wanted to see what info the folks on this forum can provide!
Sorry to have to welcome you here. Learning you have a melanoma diagnosis sucks and it feels like the rug has been pulled out from under you. Whenever I had fear and negative thoughts creep in, I’d try to remind myself that my scan results and skin exam results were normal. I was also seeing doctors on a routine basis. So, I was being frequently monitored and if there was something suspicious going on it was going to get caught early. But getting to that frame of mine while you’re still in shock is not easy.
- September 11, 2020 at 2:03 pm
I was Stage III right out of the gate because I didn’t have a mole. At one point I did and my body’s immune system zapped the melanoma cells from it but a few managed to escape into a lymph node. This was in 2010. Yep — in November this year it will be 10 years for me. I opted to take part in a clinical trial for a melanoma vaccine that eventually was canceled because the placebo and vaccine groups were doing well, so the drug didn’t have as much benefit as was thought. But, the additional scrutiny was worth it.
You probably will continue seeing a dermatologist at least twice a year for now. In additional to that, I am also assuming you will be seeing an oncologist. For the first year, oncologist visits will be every 3 months, 2nd year every 4 months, 3rd year – 5th year every 6 months. At those visits you will also be having scans and bloodwork done. If you opt for the clinical trial, they will watch you like a hawk and there may be even more frequent visits/followups.
Best advice I can offer you is to resist the urge to research melanoma on line. There’s still a lot of scary stuff about melanoma on line that’s outdated. A lot, and I mean a LOT, has changed in 10 years in terms of treatment options. The fact that someone with Stage II melanoma has a clinical trial option for Opdivo is wonderful to hear.
Thank you for the reply. The last paragraph really hit home. I think I have been spending too much time doing just that and giving myself panic attacks over it. My wife told me yesterday that she wasn’t sure she even wanted me to look into the clinical trial if all I was going to do was worry the entire time if it was working. Don’t get me wrong, she has been a rock but like anyone she has her breaking point of listening to all my “but what if”..
- September 13, 2020 at 6:43 pm
Thank you again for this board and replying.
Definitely stop scoring the Internet for info. But, do have a read of the links that Bubbles provided from her blog. She has good stuff in her blog and it’s the best resource you can read that won’t freak you out.
- September 14, 2020 at 11:54 am
As scared as you feel right now, I was much worse off that you. I was afraid to even come here to ask questions. My diagnosis was confirmed in the month of December 2010. I had the WORST Christmas, New Year’s, and birthday that year. I sat on my couch for nearly a month and was the Queen of the “But What Ifs”. When I found I was sleeping only an hour or two at night I knew I had to do something so I asked my primary care doctor for help. She prescribed Xanax initially and when that wasn’t enough, she added an antidepressant. Those, along with some good friends helped me get back on track again. By February I had ditched both drugs.
Bottom line is that if you’re so freaked out that you are not able to sleep, don’t be embarrassed to ask your primary care doc for some help. Your body and mind need rest.
Once you have a treatment plan in place and you get used to that routine, the dust will begin to settle. The Opdivo trial sounds like a wonderful option. I wish it had been available when I was diagnosed. All I was offered was Interferon, Observation, and Clinical Trial. And, I was lucky that there even was a trial offered for Stage III patients. At that time, if you were Stage I or Stage II A/ B you had Observation only.
Hey Dukester! Sorry you have the need to be here, but welcome. This board is full of smart caring peeps. Linny, being one of them, has shared some great advice. You are right! Having no ulceration and no spread to the sentinel nodes is excellent news! It makes your prognosis much better!!! But, melanoma sucks great big green hairy stinky wizard balls, so it is hard to feel thrilled with that diagnosis attached to your name! Like Linny, I have carried a melanoma diagnosis since the Melanoma Dark Ages – being diagnosed with Stage IIIB melanoma (cutaneous lesion with spread to a node) in 2003 when I was 39. With no treatments other than cut out what pops up and monitoring, I did progress to Stage IV with brain and lung mets in 2010. I don’t tell you this to frighten you. Your odds of progression are much less than that of a Stage III patient and my important point is this – even as a Stage IV patient, I was lucky to become a rattie in an Opdivo phase 1 trial and remain NED (no evidence of disease) for melanoma with no further treatment since my last dose in June of 2013!!! We’ve come a long way, baby! There is hope! Real effective manageable treatments are now available for melanoma. I am a huge proponent of adjuvant care – the treatment of melanoma in the absence of disease. So the option of doing that in a trial for Stage I and II patients is very interesting. As with everything else in life – it is a matter of risk vs benefit. Trials are an “interesting” experience, so it depends on what sort of personality you have as to whether you want to embark on that. But, either way – I think you have many reasons for hope!!!!!!!!!!!!!
- September 11, 2020 at 2:42 pm
Here are some articles and posts I have made that may be pertinent to your situation if you are interested ~
This is a “primer” I put together on the various treatments of melanoma with a link to a list of acronyms at the end: https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/08/melanoma-intel-primer-for-current.html
I have yelled and ranted about the need for adjuvant care for Stage III and IV patients with melanoma for many years!! This is a recent post on the subject and gives a bit of history: https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2020/03/adjuvant-therapy-for-melanoma-state-of.html
As you may have gathered by now, both targeted and immunotherapy are currently used in adjuvant care. Here is a collection of posts re adjuvant treatment generally: https://chaoticallypreciselifeloveandmelanoma.blogspot.com/search?q=adjuvant
I have written a great deal about clinical trials on my blog. You can use the search bubble to find more info on any of these melanoma topics if you like. But, this one is probably most pertinent to your current situation and was in large part written for other melanoma peeps on this forum: https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2020/01/clinical-trials-lies-damn-lies-and.html
Some folks like lots of intel – some prefer to see what their docs have to say. Go with what works best for you. Breathe. LIVE!!!! You’ve got this. Ask more questions as you have the need. I wish you my best. Celeste
Thank you for this. There is so much information in it that I can’t process it all right now. I’m not sure I am even processing where I am at with this right now. As soon as I start reading research reports or whatever and they start listing statistics and percentages about lifespan or recurrence I go numb. My wife had to tear me away from my phone yesterday looking at it all and ended up with me in tears. Thank you again for the support and info, I think I am going to have to take it all in slowly.
- September 13, 2020 at 6:48 pm
- September 12, 2020 at 12:42 pm
Welcome to the board and sorry for your troubles. I was diagnosed with stage 3A melanoma in October of 2011 with 2 positive lymph nodes discovered from my SLNB. I opted for a complete lymph node dissection of the left groin and have been NED since. After the diagnosis I also had a PET scan and afterward saw my oncologist 4 times per year with scans every quarter for the first year, every 6 months for the next two years and annually u til I hit the 5 year mark. I also participated in a clinical trial. At that time, Ipi was new and therapies other than interferon (which I passed on)were not available for stage 3 disease.
On the emotional side, the first month or two were a bit of a challenge digesting my new status as one of the afflicted. I also had a whopper of a post op infection that rewarded me with a two week stay at Sloan Kettering on IV antibiotics (I did sneak out for pizza on two occasions though!). At some point during the first few weeks after my discharge, I came to the realization that this was something that was not going to play out over a few weeks, but instead needed monitoring for several years. With that in mind, I began to go back to the gym, pick up my golf clubs, fully engage in my job and learned to LIVE with melanoma instead of being its frightened slave. Don’t misunderstand. The initial part of this is scary to everyone. Just try to begin to work yourself back to normalcy which will help with the anxiety.
As our den mother And melanoma pirate ship queen Celeste (Bubbles) points out, there is a world of choices for treatment and therapies compared to just 10-15 years ago. I too would have seriously considered the adjuvant treatment options if they were available to me at that time. Just review carefully what each available treatment entails and make the right choice for you. Be an active participant and advocate for yourself. Look at each offered/available therapy and prepare all your questions for your doc (melanoma specialist would be best) and make sure you have all of your questions and concerns addressed
Hang in there Dukester. Things will gain perspective and you always have the MRF crew here to help, support and encourage. Keep us posted!
Thank you for this! The part of coming to the realization this isn’t going to be over overnight really hits home. I’ve been crying a lot as I am so scared. I am scared to go outside and much of my life happiness has come from doing things outdoors;; running, bicycling, gardening, surfing (yes I am from the beach originally.. 😮 ) I have been in state of paralysis many days since the original biopsy report came back.
- September 13, 2020 at 6:52 pm
I don’t know where else to look for other adjuvant treatment options for stage 2b; this one was the only one my oncologist recommended. I don’t think I can manage traveling very far right now with other things going on in my life, but I will make sure to ask after finding about this trial next week.
In my years long pursuit of adjuvant care for melanoma patients, your mention of a trial for nivolumab in Stage I/II patients got me interested. Here is a link (though you may already have the info on it) that describes the trial I think your doc is sending you to investigate: https://clinicaltrials.gov/ct2/show/NCT04309409?term=nivolumab&cond=melanoma&draw=2&rank=6
- September 12, 2020 at 2:37 pm
You may not be interested in this just now. But sometimes, forewarned is forearmed and this might help you prep for your meeting. Either way – I wish you well. c
Thank you for this. I don’t understand much of it, but when I find out more about the trial next week I will report back here.
- September 13, 2020 at 6:54 pm
I should add I am not 100% certain the trial I will learn about next week is for Opdivo, I simply can’t remember what my oncologist said. It was a dazed & confused day all around. It may have been Prado, now that I have read other posts here. I will post more info after next week.
- September 13, 2020 at 7:04 pm
I guess I am on a roll today.. can someone explain this paragraph from this page to me like someone who is so new to this?
- September 13, 2020 at 7:18 pm
“High-risk, node-negative (stage IIB or IIC) disease — Patients without lymph node involvement but with high-risk features in their primary tumor are at increased risk for recurrence and disease dissemination. High-risk primary tumors include those that are >4 mm thick, or >2 mm thick with ulceration.
Despite the increased risk of recurrence, adjuvant therapy is not generally recommended because of the associated toxicity and the relatively favorable prognosis compared with those with lymph node involvement. In addition, adjuvant therapy with checkpoint inhibitors or targeted agents has not been evaluated in this patient population, as high-risk node-negative patients were excluded from the phase III clinical trials evaluating nivolumab, ipilimumab, and dabrafenib plus trametinib [5-8]. Patients may be offered enrollment in clinical trials evaluating adjuvant checkpoint inhibitor or targeted therapy as an alternative. ”
The bit you have copied here is basically saying –
- September 13, 2020 at 9:15 pm
Folks who are Stage II because their tumor was very thick or had ulceration – BUT – had negative nodes – are at more risk for recurrence than Stage II peeps who had thinner lesions and no ulceration.
THEN – the second paragraph is saying that in the opinion of the author – (Sosman – whom I met with back in 2003 when he was running a vaccine trial that I chose not to participate in – a good call, as it was ended when the vaccine did no better than placebo) – that with the low risk of recurrence in patients who are Stage I or II – adjuvant therapy is generally not recommended because the treatment carries what in his judgement is greater risk of harm via side effects – than the risk posed by a melanoma recurrence.
Now – his statement – “…adjuvant therapy with checkpoint inhibitors or targeted agents has not been evaluated in this patient population, as high-risk node-negative patients were excluded from the phase III clinical trials evaluating nivolumab, ipilimumab, and dabrafenib plus trametinib …” is TRUE as it relates strictly to Stage II patients. However, as you can see in the posts I have made regarding adjuvant care for Stage III patients – it has not only been tested – it is now an FDA approved option and has been proven to decrease melanoma recurrence in that population.
Hope that helps. Bottom line, if one has to have a melanoma diagnosis – and I wish neither you nor anyone else did – you are in the best possible position. You had a lesion. But it is gone. Further, your nodes were negative. Your lesion was not ulcerated. Your lesion was a cutaneous one rather than mucosal or uveal. All good things in melanoma world.
So….I’m pretty sure the trial you might be offered is designed to answer that last paragraph’s conundrum. Does adjuvant therapy help folks who are Stage II, with fairly low risk factors, and low risk of recurrence? Further, is the risk of side effects from said therapy worth it given their low risk of recurrence?
I don’t know if you want to seek that sort of treatment. Honestly, I don’t know if I would, were I in your shoes. I think you are in a pretty good place where you are right this minute – considering. No need to be crying over statistics. Yours are good!!! Plus, you are living at a time when – should you wish it – looks like you can participate in a trial. More importantly, despite the odds against it – should you progress – you can attain viable effective melanoma treatment as early as Stage III!!! It exists. It is FDA approved. It works.
So – if I were in your shoes – I would read the primer I posted for you. Not because I wrote it, but because it, like all my posts, the material is broken down in simple terms so that it is not all about statistics. It is about treatments and vocabulary. That way, the next time you meet with docs, more of their language will be comprehensible. I would meet with the folks about the trial. Doesn’t mean you are agreeing to do it. Just means you are looking through your options. Again, being able to speak their language will make things better. Things get crazy pretty quick in melanoma world. But, you can do this. Melanoma has its own rules, language and nuttiness. But it is something you can learn to navigate and then learn to LIVE with.
Take care. Ask more questions as you have the need. Yours, c
PS Your life is in no way over!!! Even as a Stage IV melanoma patient – I hike, run, bike, garden! I loved outdoor activities before melanoma. I love and participate in them now. Do I wear sunscreen? Yes. Long sleeves sometimes when I’d rather not? Yes. Sun hats? If appropriate – yes. I’ve lived with melanoma for 17 years. My kids were 10 and 12 when I was diagnosed Stage IIIb with no treatment available. I’m still here. Just think what I’ve been able to do in those years! Am I lucky? YES!!! Am I planning to keep on keeping on? YES!!! You can too. Go for a walk, a hike, whatever it is that you like to do! Is life short? Absolutely! So – don’t waste another minute of it! LIVE!!!! c
- September 13, 2020 at 9:27 pm
Awesome comment, I keep thanking you but I don’t have anything else but thanks
- September 13, 2020 at 9:57 pm
But – mine was ulcerated. At least the initial biopsy done in the dermatologist’s office was. The WLE part did not show ulceration. So as I understand it, if any part of it was ulcerated, then it was ulcerated… is that not correct?
- September 13, 2020 at 9:53 pm
I see the mistake now and why I was confused about your response. The initial biopsy showed “Ulceration” at the top and “Ulceration: not present” in the lower detailed part. My oncologist called the pathologist to clear this up and it should have indeed showed Ulceration in the part that said “Ulceration: Present”. They did not give me a copy of the 2nd, corrected pathology report and I copied from the initial one. My apologies! So how does that change if at all what you wrote? Sorry again and thank you for your help!!!!!
- September 13, 2020 at 9:56 pm
I would correct my initial post so that it shows the initial biopsy reported ulceration even though the WLE did not if I could but I don’t see a way to edit old posts here. Apologies for the mistake in the begtinning.
- September 13, 2020 at 10:11 pm
No worries!!! Okay. Everything you posted at first indicates that there was no ulceration present on your lesion. No, there is no way to fix that on this post as there is no edit button. SO – Deep cleansing breath. If you have determined that your cutaneous melanoma lesion was actually ulcerated, then yes – it was ulcerated. And, yes, that is a negative risk factor in melanoma. We would all prefer that that was not so. STILL!!!!! Your nodes were negative. You are still only Stage IIb. Your odds of recurrence – as Sosman noted in the article – while slightly greater than a Stage II patient with no ulceration – it is still LOW RISK – such that he is not even that keen on pushing for adjuvant treatment!!!! There are lots of folks like Linney who was diagnosed as Stage IIIB – had a lesion and a positive node who have yet to progress with no treatment!!! There’s me – also Stage III out of the box with a skin lesion and positive node in 2003. Because there was no treatment, I did no treatment. Yet, even so I didn’t progress until 7 years later. But then I DID get treatment and I am still here to tell the tale. SO – ulcerated is not as good as no ulceration. But you are still Stage II with a diminished risk of progression. Period. Here is a good site that breaks down staging – https://www.aimatmelanoma.org/stages-of-melanoma/stage-ii/
- September 13, 2020 at 11:10 pm
The only significant change I see in your “prognosis” is that you might have a higher chance of getting in the arm of the trial being offered that is placebo vs treatment rather than observation only with the presence of ulceration as a risk factor. From my brief look at the trial link I sent you, it seems that they are dividing folks based on risk. So, I don’t know how you feel about this – or even trial participation generally – but really that is the only thing that changes in my thinking about your circumstance.
Hope that helps. Keep asking questions until you get all this straight in your mind. There are lots of smart helpful peeps here. Many of us have been there – done that. Including all the crazy learning curve and emotional roller coaster that goes with a melanoma diagnosis. c
Wow this is such good information. Everyone has been so helpful and I have been able to breathe for the first time in a while! When I go next week to learn more about the clinical trial I will report back here with what I learned and I hope you can help me decipher it enough to make a decision; I assume I won’t have to decide the very first time I go to hear about it?!
- September 13, 2020 at 11:36 pm
They may ask you to sign on the dotted line that day, but you are completely free to ask for a minute, day – whatever you need time wise – to make your decision. I did include a link above to a post that included my thoughts on Clinical Trials generally – most of it written initially as a response to a fellow MPIP peep – as some food for thought (and questions you may want to ask) before you go for you consultation – if you like. Good luck! c
- September 13, 2020 at 11:50 pm
PS. Two important thoughts about all the stuff on the web:
Treatments for melanoma radically changed from nothing to legitimate effective available therapies just since 2011. Most web findings do not reflect how melanoma patients fare NOW.
Apples have to be compared to apples. Most of what you see on the web is about Stage IV peeps before current therapies. YOU are not Stage IV. Valid information for YOU needs to about Stage II peeps. Given their decreased risk of recurrence – that is not usually the group that is being addressed.
For what it’s worth. c
I primted the page out from your blog on trials and will read thru it again this week before I go next week. Thanks again!!!
- September 14, 2020 at 12:45 am
Tagged: cutaneous melanoma
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