› Forums › General Melanoma Community › Melanoma Specialist
- This topic has 8 replies, 6 voices, and was last updated 6 years, 10 months ago by
gmschmidt.
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- June 23, 2017 at 12:21 am
My husband was recently diagnosed with stage IV melanoma which has spread to his Lymph Nodes. We are still waiting for some additional test which will determine which type of treatment will be suggested. So far we like the Oncologist just fine and he has a good reputation as a Oncologist/Hematologist. I'm not sure how much Melanoma he has delt with, he seems knowledgable, but he's not a Melanoma specialists. How important is that?
What about getting a second opinion (like on the treatment for example)? I'm not sure what would be involved since we've already seen him several times and I don't want to waste time before getting started, also not sure if that would be covered by our insurance. Like I said, I have no reason to believe my husbands Dr. doesn't know what he's doing, it's just with something this serious we want to make the best decision.
Interested in feedback by others who have been through the beginning steps.
Thanks so much!
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- June 23, 2017 at 12:34 am
General oncologists rarely deal with late stage melanoma patients, simply because it's a less common form of cancer than things like lung and breast cancer. Treatment for melanoma is very new in the world of cancer treatments (immunotherapy not chemotherapy) and has a whole host of side effects that really only a melanoma oncologist is going to be on top of. I am sure general oncologists are now getting more familiar with immunotherapy since it is approved for one type of lung cancer and some other cancers, but in their game it's brand spanking new. I saw a general oncologist before finding my melanoma oncologist, and the knowledge base and care was a world of difference. Both great doctors, but my confidence in knowing that my oncologist is super on top of knowing what tests to do for any symptom that presents itself as a possible serious side effect makes me feel much more comfortable.
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- June 23, 2017 at 1:12 am
I got a second opinion with a melanoma specialist about a week after my initial diagnosis. For me there was a noticable difference. The melanoma specialist already had a plan and was great with questions and concerns that I had. She is really on top of not only the latest treatments but very in tune with the side effects and best ways to treat them. Not sure where you are but if you are in the US you should be able to get a second opinion covered. My experience has been that the second opinion mattered and seeing a melanoma specialist mattered. I'm also stage IV and was diagnosed last September. Once things get started they really do seem to move quickly. I had multiple tumors when I was diagnosed and saw great improvement with immunotherapy. I did also have some surgery and radiation. I'm in the Boston area so I'm getting treatment at Dana Farber and they are wonderful. I have a team of doctors and they are great. Best wishes to you both. I hope things go fairly smoothly for you. It can be a bumpy ride at times and this board is so helpful in getting you through it.
Jennifer
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- June 23, 2017 at 2:58 am
Hello Anon,
The importance of a specialist cannot be underestimated. Because of this board, I was convinced to seek out a specialist when my regular onc seemed to have run out of options. For me, it means a 5-hour plane ride and a $1000 out of my pocket every visit, but you know what? Here I am, in my 5th year at Stage IV, feeling better than I have in years. In the beginning I did not even expect to make it this far given the aggressive nature of my disease. My specialist saved my life. BTW, my local onc can deliver treatments under the direction of the specialist so traveling, if necessary for you, may be kept to a minimum. I have to wonder about your husbands diagnosis. Spreading to lymph nodes only is still Stage III, he's not a IV until disease shows up in distant places. I certainly hope it has not, but now you know what to do. Best in the battle
Gary
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- June 23, 2017 at 12:04 pm
Sorry you're going through this….but I echo the above on both going to a specialist and getting a few opinions. Ultimately, the course of treatment will be your decision and you want it to be as informed as possible.
I went to 3 docs here in Chicago and flew down to MD Anderson in Houston, was able to make an informed decision on choosing my doc and the treatment. I'm only 6 months into this disease but have had a great outcome so far.
Fight on..
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- June 26, 2017 at 2:39 am
Definitely, positively, without a doubt see a specialist and get second or third opinions. This is a v. serious disease, and the bottomline: All Doctors Are Not Created Equal. Find a top melanoma specialist/center. Recommend this piece in Washington Post. All doctors are not the same. This woman's sister found treatment her NYC dr couldn't.
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- June 27, 2017 at 10:27 pm
Thank you to everyone who has replied, all this feedback is extremely helpful. It seems like it's unanimous that my husband should get a Melanoma Specialist. However, that seems to be easier said than done since apparently that isn’t a standard specialty. I’ve been googling my fool head off. I have checked through many reputable Physician finder sites for Melanoma Specialist, and I get Oncologist, Surgeons and dermatologist and somewhere on their profile it says they deal with Melanoma. So how do I know that isn’t just like the one we already have. An Oncologist who has experience with Melanoma patients. I called The Siteman Cancer Center, a very reputable research center here in St. Louis to ask for a recommendation or referral. I told the scheduler that we specifically need a Melanoma Specialist and she acted like she has never heard the term. She just pauses and says the same thing. “Yes, we have several Oncologist who work with Melanoma patients. How do I know who is truly a Melanoma Specialist?
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- June 27, 2017 at 11:36 pm
From what I have found, a melanoma specialist is found at a major cancer center/university hopsital and within that center there is a melanoma/skin cancer department. Not all cancer centers have them, but a lot do. Where I go, the 3rd floor is literally called the Melanoma Center. The oncologists where I go mainly deal with melanoma patients, but some of them also deal with things like head and neck cancers. Maybe someone near the St. Louis area will chime in and say what oncologists they know of. If you're up for traveling to a specialist, there are definitely good ones in Chicago.
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