› Forums › General Melanoma Community › Newly diagnose, confused and scared
- This topic has 8 replies, 4 voices, and was last updated 8 months ago by
BillMFl.
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- July 28, 2023 at 7:28 pm
Hello, I was diagnosed with superficial spreading melanoma on my right upper arm in May. The initial biopsy was non-ulcerated 1.1mm staged at 2a and referred to have a SLN. WLE had clear margins. The dermatologist said not to worry. There was a very small chance, around 8%, the SLN will come back positive based on what they usually see with patients who have melanomas like mine.Had the SLN at the end of June, and the SLN did come back positive. The surgeon removed 4 lymph nodes and one SLN had .8mm melanoma deposit. Now staged at 3a. Dr ordered a brain MRI and CTs of abdomen/pelvis and chest. All with IV contrast. And was referred to a medical oncologist. He said not to worry… Based on all the biopsies and characteristics of my melanoma it’s very unlikely to have spread anywhere else. He also referred me to a medical oncologist.
Had the MRI a week ago and it came back clear, no indication of disease. Had the CT of Abdomen/pelvis and chest yesterday. Results for the abdomen/pelvis came back yesterday – clear, no indication of disease. The chest X-ray was posted to my chart today – there is a “pulmonary findings: nonspecific 2mm solid nodule in the right upper lobe… can be followed up with future surveillance”.
My Dr. hasn’t called to discuss any results, but has anyone ever had a similar reading on a chest CT and had small nodule be benign or does this always mean the melanoma has spread? Does “nonspecific” mean they just don’t know what it is. I’ve read that a lot of people have benign nodules in lungs from past infections or from smoking, but my guess it that it is probably melanoma. It’s on the same side as the lymph node that was positive under my arm/chest area. If my doctor says they just want to watch it, should I insist on having it biopsied or removed? I really don’t know how I am supposed to feel about all this and I’m really not very good at talking to people.
The medical oncologist appointment was on Tuesday 7/25 and she gave me the option of immunotherapy treatments, but I haven’t decided if I want to do the treatments yet. They told me the risks of the melanoma coming back or killing me was about the same as developing severe permanent side effects to the drugs with a coin toss chance of it actually working against my melanoma. I guess if the there is cancer in my lungs that changes the risk vs benefit factors of my decision.
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- July 28, 2023 at 7:42 pm
I should also add that I have mild asthma that was diagnosed my primary care doctor about 5 years ago, but they never did any X-rays or scans. My doctor said it wasn’t necessary. Oh, and all my blood labs that were done on Tuesday 7/25 came back in normal ranges. -
- July 29, 2023 at 9:19 am
I wouldn’t worry about the lung module. My doc told me most people have lung nodules that aren’t related to cancer, like 80% of people. Your report doesn’t sound like it has suspicious features.Try not to worry, but I know that is very hard at this stage!!! I get it. It will get easier, trust me. Also know stage 3A has pretty good outcomes, better than most stage 2.
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- August 7, 2023 at 1:32 am
Hi Nicole, I agree with YoJa with inflamed nodes are very common from a range of condition and drugs. I wouldn’t be concerned about that per se.But I would also choose immunotherapy if I was in your position.
I was 2B when diagnosed on neck and had a brain met five years later. It was almost instantly caught because I was already having frequent brain MRIs so I had a low tumor burden elsewhere. When I was diagnosed there was no immunotherapy and frankly I would give anything to be able to have that option. I actually find it mind boggling that someone would not chose it now and also realize that it perhaps shows how quickly the mindset has changed. In less than ten years I faced a an absolute death sentence if I went to stage 4
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- August 17, 2023 at 11:08 am
Good luck with your decision! I am very conservative and prefer a needle biopsy as a first step. Not a pleasant experience but can eliminate “false” positives. Many others are more comfortable using the heaviest “hammer” from the getgo. It is more likely for distant Mets to first appear in a sentinel node but truth be told mm has the ability to take a variety of paths and is not totally predictable regardless of where it occurs or where it travels to. The main thing is to make the decision you are most comfortable and then be very proactive with monitoring your all your results, staying informed and keeping all followup appointments, etc. Be proactive, get full explanations from your care givers, and fully embrace a healthy lifestyle! Eat well, report any unusual symptoms, etc., get plenty of exercise (exercise can help control stress). Be your own advocate and don’t be shy about asking questions! Treatment options have come a long way since my initial dx (there was surgery and very toxic chemo and not much else). Knowledge is power and every patient deserves full explanation of their situation and probability of outcome. Never be shy about asking questions from your care givers! There are many long term survivors regardless of stage at time of dx. A positive attitude and healthy life style are very important!-
- August 17, 2023 at 11:46 am
Thank you so much for responding, BillMFI, and for the info. I had .8mm melanoma in one SLN when they did the SLNB. The other three nodes they took out had no melanoma in them. Then when the chest CT came back with a 2mm nodule, it made me really worried (still does). I’m a previous smoker, and had finally succeeded in quitting a few month before I was first diagnosed, so I also have a higher risk of developing lung cancer too. I talked to my Dr and they said it was too small to biopsy and that there are several reasons besides cancer that can cause lung nodules from the air we breathe to past viruses or other irritants (such as my previous smoking), so they just want to watch it. I decided to go ahead with the treatments as a precaution since if it is cancerous, the earlier it’s treated, the better the outcome. Had my first Keytruda dose on the 10th. So far so good with zero side effects, that’s not to say side effects won’t show up in the coming weeks, months, years… My fingers are crossed that the next scan will show no change, or best case that the nodule is gone and it will be nothing to have worried about.
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