What does one do?: Does anyone have... - Melanoma Caregivers

Melanoma Caregivers

What does one do?

Sunlife
Sunlife

Does anyone have melanoma plus another cancer to go with it? I have melanoma and now POSSIBLY prostate cancer. Let me know how you are handling it. And how are you feeling about going thru two different cancers at once.

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missyrand
missyrandAmbassador

Dear Sunlife,

What a challenge to be taking care of yourself on two fronts at the same time.

I am a caregiver, not a patient, but I also facilitate a monthly melanoma support group that is for patients and caregivers in the Northern Virginia/ DC area, so I can comment on my experience with that community.

The research lets us know that, sadly, once you have any kind of cancer you are more likely than the general population to have a second one. Persons living with melanoma are not excepted from this statistic.

In our support group of about 20, one person in her 60's was diagnosed with a single melanoma as a late teen and did not have a recurrance until in her 60's, and it was aggressive at that point. By then she was also living with thyroid cancer, and since melanoma treatment developed breast cancer. I think because she has been vigilant about noticing changes in her body, and has been timely on her regular check ups, including mammograms, she has been able to respond to each of these cancer presentations fairly quickly. She was also a caregiver for her husband as he lived with lung cancer. Her breast cancer did not show up on her CT scans for melanoma, and she had no other symptoms when it was detected on mammogram. She has a general oncologist who tracks all her cancer health and collaborates with specialists for cross-over. At first it was unclear if the breast cancer was a new primary for melanoma, but biopsy demonstrated it was a different type of cancer.

Another woman in our group, also a caregiver in the past for her husband who died from a cancer, developed breast cancer in her 50-60's, then aggressive melanoma after.

A friend of mine has concurrent ocular melanoma and prostate cancer.

All of my friends referenced seem to use the same skills/ approaches listed below:

1. They have an identified lead specialist for the specific cancer.

2. The treating practices have relases of information so the practitioners can consult together about any potential cross-overs/ interferences with treatment and side effect medications. This is especially important with regards to use of steroids in any form, including topical

3. Coping skills used for any cancer, or life shortening illness, can be brought to bear again when confronted with a new diagnosis or relapse of cancer. For example: doing your homework of basic research about the cancer, treatments available, growth curves, genetic testing of tumors, journal writing, keep breathing!, getting mental health support, enabling your family and friends and faith/ community supports to help with practical items (grocery shopping, grass-cutting, child care, cooking (including food gift cards), laundry, housecleaning, driving to appointments, taking notes during appointments, organizing research and questions for visits, composing group emails/ keeping a central blog with information updates, simplifying daily life, respecting energy levels and "brain fog", prayer/meditation/exercise/music/laughter/movies/books on tape/ pet cuddles or whatever provides mental distraction for stress breaks, talk it out with a few individuals you trust and whose opinions are sound, keep records of meds/ dosages/side effects, consider recording your provider visits so you can listen again later, don't hesitate to contact the provider/ nurse for any concerns/ weird stuff/ questions/ clarifications/potential side-effects. Going to a cancer type specific support group (probably virtually at this point) may also be helpful.

4. Ask the difficult questions: what is the stage? what does this mean? what treatments are available and what is the liklihood it will cure/ halt/slow down this cancer? what is the timeline for treatments? what if I choose not to do this treatment intervention? how does this interact with my other cancers/ general health conditions? what side effects are likely/ high risk and what should I have on-hand as back-up for these? what is my prognosis? will what I eat/ drink/exercise affect the treatment/ cancer and what is the evidence for this? what clinical trials are currently available and please talk to me about them and assist in getting my records to the investigator? get a second opinion: NO doctor should have an issue with this. We got second opinions every step of the way even though we often returned to choose the first one: it allowed us to consider different approaches and fit for us/ our values. Have a good existential/ theological/ spiritual resource person so you have the freedom to rant/yell/mourn/find strength with your faith structure which may be quite tested in the face of your mortality. And here is a toughie: how will we know that the treatment is effective vs not working? What is the second line of treatment and prognosis/ liklihood of cure/halt/slowdown of cancer progression VS palliative care VS hospice choices.

5. Get your financial affairs in order. Update your medical directives, will, co-ownership of bank accounts/cars/ homes/ investments. Advise your family where ALL these documents are and who is responsible legally for decision making. Keep a list of the gazillion passwords you have for email/phone/TV/ bank/credit cards... all the things, so when you are feeling so poorly you just need to sleep or can't function, someone else can do it for you.

So, I've said a lot of things for someone not living with 2 kinds of cancer. But I've also learned all these as a caregiver for my husband who died this past year after living with melanoma for 5 years.

Other HealthUnlocked folks, feel free to weigh in. And Sunlife, feel free to also share how your experience is, and that of your carepartner.

peace,

Missy

Sunlife
Sunlife in reply to missyrand

Thank you for your reply

Dear Sunlife, I am so sorry you have to go through this and Missy has already answered your question in the most complete way possible, as always. But I can tell you that I am the caregiver for my husband who has stage 4 melanoma and in one of the scans another primary cancer was discovered. In his case it was papillary thyroid carcinoma that turned out to be stage 3. He had no symptoms whatsoever and has been treated through surgery and is on thyroid hormone replacement medication now. All going well. We go to UofM in Ann Arbor, MI and the 2 oncologists easily communicate about anything necessary, which is the advantage of being in a big academic cancer center. As Missy said, it continues to be important to educate yourself on both cancers in order to make informed decisions.

I wish you all the best and hope this helped.

Dorothe

Sunlife
Sunlife in reply to doulagirl

Thank you for your input. Hope everything goes well with your husband.

Sunlife: Welcome. As if one cancer isn't enough.... but I guess that's not uncommon as Missy points out. Please know this group is here for you while you navigate these treacherous waters.

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