Nowhere to turn and very confused - Melanoma Caregivers

Melanoma Caregivers

Nowhere to turn and very confused

lovestotravel84
lovestotravel84

Hi. First off, nice to meet everyone. This is my first post. Around this time last year, my mom went to her pulmonologist and when he was checking her lungs he noticed a mole on her back. He suggested she get that checked because it didn't look right. She made an appointment with the dermatologist and he examined it and said we can do 2 things. Leave it as it and monitor it every 3 months or remove it. My mom has been through a lot medically. In 1992, she was diagnosed with Hodgkin's lymphoma and has been in remission ever since, she had a splenectomy, both knees operated on, open heart surgery, stent and some other stuff. Knowing all this, I said why don't we leave it as is and continue to monitor it. We went back 3 months later and there was no change. We went 3 months after that and there was no change. Then 3 months after that it started to grow and the doctor said it needs to come out. He took it out and sent it for a biopsy. Last week she gets a call from the doctor that she needs to come in immediately. We go in and he says it's melanoma and that she needs to go a surgical oncologist. We have an appointment for this Friday. I am a nervous wreck. I've been doing a lot of research online and I don't like what I see. I'm freaking out and can't sleep. I can't concentrate. All that I keep thinking is that it spread. She was just at her oncologist that she sees from the cancer the first time around. Everything was fine. He felt her glands and did a breast exam as well as blood work. The blood work shows anemia, but her LDH is within range. In my research, they can tell if melanoma spread by the LDH levels. She goes to all her doctors regularly. I'm not sure what to think. The mole is out, so doesn't that mean it can't spread. Thanks so much for reading. It feels good to get that out. I'm also here if anyone needs to talk. Thanks again. My prayers are with everyone and their families.

6 Replies

I'm so sorry that your mom is going through this after all she has been through already.

I have walked this walk with my husband and son and can tell you steps from here.

They will more than likely suggest surgery. 1 to remove skin around the initial mole for additional testing and they might even suggest removal of 1 possibly 2 lymph nodes for testing.

They can test the nodes during surgery to determine if it has spread.

lovestotravel84

I’m so sorry you’re going through this - and the first weeks really are the worst - shock, confusion, fear. Suggestion - visit the Melanoma Foundation’s website at melanoma.org and post/read in their forum. There’s so much bad info on line, including what’s out of date since treatments have changed a lot just in the last couple of years. (And stop “researching on line; melanoma isn’t diagnosed through LDH.)

It’s important for you to have the pathology report, which should also show depth of the mole, stage, etc. That would be good to post at the Foundation forum too, since treatment depends on depth/staging.

You might also want to read a primer about melanoma written by a Foundation forum member, Celeste, which summarizes a lot.

I’m not usually on this board but saw your post and wanted to offer that suggestion.

Reply

missyrand
missyrandAmbassador in reply to bejeans

Be jeans and lovestotravel84

I’m traveling home from hiking in Montana so my reply is short but totally concur with the previous authors. Getting pathology read by a skin cancer specialist is key, and you may want a second reading. How the pathology is determined coupled with the gene expression of the mole will drive treatment.

If the pathology is melanoma then consults with melanoma specialist is the best way to go. If there is not someone like this in the community where your mom lives you might try one of the melanoma specialty research centers across the country, even via telemedicine.

Use legit sites like the Melanoma Research Foundation and the National Cancer Institute so you get the most updated information. Having a mole removed does not tell you anything yet about staging or potential spread.

We remain here to support you. Your mom sounds like a tough cookie and we all wish her and you the best in news.

Missy

A last thought. You want to see a melanoma specialist who is an oncologist, not a general oncologist. The pathology report will give the specialist the info that’s needed to point to the next steps.

The good news is that specialists are in many parts of the country, not just at major institutions. Your dermatologist should be able to refer you.

Not every large institution maintains a major focus on melanoma. My husband’s dermatologist provided three places to select from, including one of the highest rated hospitals in the country which isn’t that far away. We asked which he would go to if he or a family member had melanoma and selected that one. Interestingly, it was not the highest rated hospital center, but instead a more local melanoma center, where the director is known to be excellent.

missyrand
missyrandAmbassador

There is also a new document just out from the National Comprehensive Cancer Network Foundation that describes staging, tests, and various kinds of treatments that could be helpful to read: nccn.org/patients/guideline... This may help you be prepared with the language and recommendations that may come as a result of the tests. Writing down your questions as you read may be helpful.

Missy

missyrand
missyrandAmbassador

Lovestotravel84

Checking in on you and your mom

Peace

Missy

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