Pathology Results and Surgeon Visit

Everyone here will tell you the most important thing is for your brother to see a melanoma specialist. Not a general oncologist or general surgeon. It’s of utmost importance. I fly from Ky to Houston every 3 months. It’s expensive and a pain but I’m alive because of it! Also, if you haven’t already, use the search bubble to find the blog by Bubbles (Celeste) where she has put together a primer for new patients. Ed also has good information! Best of luck.

Cyndie,
Just fyi, I see you are in Tyler, TX. I see a melanoma specialist at Baylor in Dallas, Dr. Lance Cowey, which is only about a 90 min. drive from Tyler. Just a thought. Great doctor. Have been with him since I was diagnosed 2 years ago.
Amanda

Hi Cyndie, I am sorry to hear bad news about your brother. Pathology report does seem serious, but thankfully there are lots of options these days to treat melanoma. I think that the most important question right now is whether the cancer has spread and how far. Another important question is whether his tumor is BRAF positive. These answer would direct his treatment options. I understand that he is a stubborn guy and he doesn’t want to see a melanoma specialist, that’s unfortunate but he is an adult and can decide for himself. I think that at this point, the doctors that he is seeing can do all the evaluations, CT scan, lymph node biopsy (if needed), BRAF testing on the surgery specimen (they are doing BRAF testing, right?) and then with all the information, suggest the treatment plan. Depending on what they say, and how your brother is feeling, he may be willing to reevaluate his decision to see a melanoma specialist.

In general though, he is probably looking at a surgery and then some kind of systemic therapy, either BRAF inhibitors or immune checkpoint inhibitors. This is going to be a prolonged treatment so he should get mentally ready to deal with this. But again, that would depend on the staging.

Quitting smoking is very important for his treatment success, and I hope that he can do it. All the best to both of you and please keep us posted!

Dr Gaba has been my oncologist since September 2014. She treats other people with melanoma, but melanoma is not her specialty. I have been pleased with her care. In March 2016 melanoma was in many of my bones. After ipi + nivo immunotherapy my bone cancer disappeared. Despite one remaining tumor I have been healthy for 3 years. I doubt that I would be more healthy, if I had traveled to be treated by a melanoma specialist. I walk from my home to my cancer center.

Cyndie, I’ve been thinking about you all. Just so you know, this is serious but you will get more information to point you to the best treatment and there are very powerful treatments now. Being on the scalp, that is an area that they worry about spread, so glad they are dealing with this quickly and taking large margins, and doing the

1) My husband had a very deep melanoma (22 mm). His pathology looked very similar in all categories except depth was 22 mm and clark level was 5. There is another lady who has a blog, whose husband had 7.5 depth on scalp and he has been clear for over 7 years.
2) My husband is Ukranian, stubborn, non-compliant, etc. He went to work the day after surgery and only missed the day of surgery, his work ethic (like your brother) is astounding. Dr. Cormier at MD anderson told me just to let him go to work if that helped him and it tid. It took a bit for him to get the need for aggressive action and I had to go Bobby Knight on him several times. It is his decision and he chose wait and watch once we had all the information that lymph nodes and scans were clear, but I needed to let him know all the options and benefits/disadvantages of those options and he had to take ownership. It has been exhausting, but I guess that is the price you pay for loving stubborn people, I probably wouldn’t love him if I could boss him around all the time:). Your brother is scared right now, totally get it.
3) My brother was a Marine with severe substance abuse issues for decades, we can relate. however, when he was ready, he was ready to let us advocate for him and get him the best treatment. I told him to let us take the burden off of him and let us (his sisters) take over for a while and focus on getting better. We told him that I needed this and once he felt that he was doing us a favor and supporting us by letting us do this, it helped.

Your brother does have a lot on his plate but he is tough like you said and he’s got you. Congratulations to your brother for completing rehab, that shows greater toughness than many of us know. If he can do that, he can do this.

Once you have all the information from the surgery, CT scans and molecular testing, and if CT shows anything, like others have said, he will be offered systemic treatment . He’ll most likely be offered adjuvant therapy even if there is no distant spread but lymph node involvement, and this is awesome, that wasn’t available several years ago. Still hoping for the best news for you all. If your brother decides to come down to Houston, he has our full support. But wouldn’t give up on talking with your brother about this frankly and keep asking.

I’ve not been above literally guilting my husband into compliance 🙂

many hugs and here in Pearland if you need anything.

Hi Cyndie, im Mike iv read a few of your posts lately and im glad your bro has a loving sister behind him!
Like him also, i to am a recovering alcoholic and addict (mainly drugs) been sober since 2007,( kinda funny how i quit drugs & alcohol then the following year get diagnosed with yet another Deadly disease! Life is funny like that, atleast for me..) its been a little “Trying” these past few weeks on my sobriety but I know if i EVER pick up again, ill die before any Melanoma kills me…And, like yer bro, im trying to stop smoking, its my only “vice” and i “think” it helps me get through it all, i tell myself “I already have cancer so, wth?…one day at a time….
Please tell your bro i said Thank You For His Service, i see he may have been a vet from the 1960’s, maybe Vietnam? My dad fought in Nam (the mighty 1st Cavalry Division 65/67) so, if he was there tell him Welcome Home uncle! Take good care of yourself to Cyndie, Aug 15th he has surgery and same day i see my last of the line Kaiser oncologist the 15th to! Prayers for us both….

Hi Cyndie,

It is great that you are advocating for your brother. My husbands tumor was also on his scalp only a little larger his was 10.5 mm. He had his surgery with a skin
graft as well. This was in 2008. He had several more surgeries also to the scalp and one by his collar bone. Then when the next one came it was non resectable
and located near the c1 and c2 spine with several subcutaneous ones and scans showed he also had them on his liver and lungs. This made him Stage IV.
So in March of 2011 he was in a clinical trial of Ipi (Yervoy) 10mg/kg by IV every 3 weeks and daily self injections of GMCSF 2 weeks on and 1 week off. In July 2012
he became NED (no evidence of disease) and has remained NED for over 7 years now.

The one thing I also suggest is a Melanoma Specialist as they are more up to date on treatments that work for melanoma and for treating the side effects.

Judy the loving wife of Gene Stage IV and now NED for 7 years.