New diagnosis -76 year old mom

[Sunny44]

Hi everyone. I really appreciate everyone's sharing on this site. It's very helpful to hear others' experience. My mom (76) was recently diagnosed with stage 3 melanoma. Initial site was her toe. It's not sun related. They said it is fairly aggressive. She's had her toe removed and one lymph node in groin removed and tested. Some but not much cancer in the lymph node. Stage III - I don't know if a,b, etc. She's elected not to have the lymphectomy where they remove all lymph nodes. That's because her doctor said new research shows it doesn't seem to affect mortality as previously thought. She goes to a melanoma center of excellence's so is in good hands. She had her first PET scan last week. Gets the results next week. I can't go to all of her appts but someone from the family does. Right now we are scared but also feel we don't have an idea of the path forward. The doctors only give us a kernel of info on the next step. I'm Sure they don't want to scare us and they really don't know what the path will be without the PET results. But it seems like there aren't many treatments. So much seems like it's a clinical trial. Maybe Keytruda and some other immunotherapy? And it does seem like it's "sneaky" from others posts and can move around and every case seems so different. Is there a "typical" treatment? At her age she is probably not going to want to do a lot of radical surgery as she might if she was younger. Does anyone have a similar experience? And besides quizzing the doctors as I've learned you need to, are there other treatment resources we should be reading?

[missyrand Ambassador]

Dear Sunny44,

I'm glad you are finding the posts helpful as a starting point to partner with your mom. You are fortunate to have a melanoma center for excellence close by, and always having someone as a listener/ note taker/ question asker at an appointment is good advice no matter what the age of the patient

Immunotherapies are kind of the deal right now. Some folks have very low side effect profiles, like my husband. Others have life threatening reactions, so monitoring after infusions is very important. One should never hesitate to call the nurse or doc on call for any symptom, because you can't tell if it's normal process or drug reaction: talk to the provider and let them sort it out based on their experience.

I'm sorry your mom lost a toe as a surgical intervention. How is her balance?

It's ok to also push the providers to give more information once you have the PET scan results. These are important because it will tell you all if the melanoma has spread, and this guides treatment interventions and choices. It's also ok to ask and what if I do nothing, or only this or only that. You may want to ask about palliative care interventions to accompany treatment from the start (many of us wish we had; this is different from hospice which is an approach when the patient is expected to have a life expectancy of under 6 months).

If there is a good fit for her tumor type (ask doc to tell you all the details and write them down because it is scientifically specific) and updates the staging, ask about which immunotherapies are possible fits, and if there are clinical trials that are also an option. clinical trials tend to focus on newer combinations of immunotherapies right now in terms of type and dosage. Some target persons like your mom who are treatment niave and some for folks who have already had one type of previous intervention. They like to see big tumors in multiple places where they can track how well the trial drug is working.

Keep us up and godspeed.

Missy

[Sunny44 in reply to missyrand]

Thanks, Missy, for your advice. It is a whole new world and it's great to have the support and wisdom of others who are already on this journey. All best wishes to you and your husband.

[missyrand Ambassador in reply to Sunny44]

Thank you

Keep us up on your progress and ideas.

Missy

[Sunny44 in reply to missyrand]

Thanks. I will. I've already learned a lot here. Her PET scan results are next Thursday so we will know more then.

[Vflowers]

Sorry that you had to join us this way, but welcome. I'm glad your mom is seeing a melanoma specialist. Keep us posted about her PET scan.

[Sunny44 in reply to Vflowers]

Thanks. I will. It's all an education and I'm very thankful for this resource and the willingness of everyone to share.

[Sunny44]

My mom's PET scan results were good. No sign of melanoma in her leg. No sign of melanoma in other places in her body (liver, lungs, other lymph nodes etc.). She has some nodules in lung and near ovary that they will check for growth as she will be having active monitoring but they were not concerned about those. She is due for an appt with her oncologist - this appt was with the surgeon still but apparently they all meet as a group.

He reviewed the various choices about how to go forward.

· Option A – Active monitoring. This is ultrasound every 4 months for first 3 years, then 6 months for two years, then annual. Any recurrence would then be treated.

· Option B – Remove all the left groin lymph nodes. This is surgery and does have risks of edema etc. We are aware that more recent studies show removal doesn't affect mortality and at age 76 she doesn't plan to do this unless her appt with the oncologist supports a different approach. The cancer in her lymph node that they removed was very small .3 mm.

· Option C – Immunotherapy – some trials are available. We will talk to the oncologist to discuss this as a possible treatment.

So it all sounds very positive considering everything and we are very thankful and grateful. I'm still concerned that it was described as an aggressive cancer and know how sneaky this disease can be from this site and other research. We'll question the oncologists as I've learned from you all here how important that is.

Are there other things we should be asking or thinking about?