Melanoma Centers of Excellence

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1/12/2014 12:56am
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Replies: 14

My husband has just had his second surgery to remove more lymph nodes from the groin area. He had surgery on a melanoma of his foot and cancerous lymph glands removed in October. He was being screened for a randomized interferon/ipi clinical trial, but the PET scan lit up, leading to this new surgery. Surgeon found that the cancer was more extensive in additional nodes and groin area than anticipated.

At this point, I am uncertain if we are still Stage III, or if this is now considered Stage IV.

We are in Sacramento. Our surgical ocologist has now said it's time for us to see a doc in San Francisco. I see that there are several "melanoma clinics" in SF, but are these considered to be "centers of excellence" for melanoma?  We are likely to be referred to a melanoma specialist at California Pacific Medical Center. It is hard for me to tell if this is truly considered a "center of excellence" for melanoma - can anyone please advise?

A complication for us is that these operations have left my husband with severe lymphedema of the leg, so getting on an airplane to get to a more distant clinic would be problematic.

Thanks for your thoughts! 

MicheleM

I disagree with the term as it is not an approved cancer/melanoma term.  Have you seen a Peer Reviewed article that uses the terms :

Melanoma Comprehensive Cancer Center or

Melanoma Center of Excellence or

Melanoma Comprehensive Center of Excellence ?

I HAVE NOT !

 

I tell people that the NCI has Cancer Centers of Excellence listed on their website. They do not rate them by type of cancer.

I suggest looking for Melanoma Specialists at the main cancer centers (especially at the NCI designated- Cancer Centers; Comprehensive Cancer Centers)

> http://cancercenters.cancer.gov/cancer_centers/
>
> NCI-designated cancer centers are characterized by scientific excellence and the capability to integrate a diversity of research approaches to focus on the problem of cancer. They play a vital role in advancing towards our goal of reducing morbidity and mortality from cancer.
>
> Number of NCI Designated Centers:
> 27 Cancer Centers
> 41 Comprehensive Centers
> 68 Total
>
>
While all these are not great as far as Melanoma Research is concerned. I believe this is a good starting point. I then say that one should look for a Melanoma Specialist, not just an oncologist within this grouping. 

    My Melanoma Specialist Oncologist's are working to add the "Comprehensive" to the UVA title vice their current, “NCI designated Cancer Center”, but they are very much highly informed Melanoma Specialists at many NCI designated Cancer Centers.

_______________________________________________________________-

Many people here can give good references for locations/Oncologist we have loved.  If you know what his DNA mutation is, You can then research papers published by different Oncologists that address this area.  For instance, not a lot of Oncologists have worked with my rarer c-kit melanomas.

Good luck in this journey

I'm me, not a statistic. Praying to not be one for years yet.

Michele,

Have you tried the search feature on MPIP yet?  I just typed in sacramento and found a couple threads with doctor recommendations.  There are some great melanoma doctors in the LA area but that might be a little far for you.  I think I've heard Dr. Minor's name in SF a few times before.  You might want to start a new thread "Melanoma Specialist recommendation near Sacracromento".  I think you might get some responses from that.  Good luck.

Brian

Anonymous - (1/12/2014 - 8:42am)

Try looking here: http://melanomainternational.org/web-resources/cancer-centers/

also MIF has a forum with a search that works:  www.melanomaforum.org  and you can call the helpline for personalized advice.   UCSFprobably has the most research going on and that's the best.  

POW - (1/12/2014 - 10:38am)

I, too, have heard several patients praise Dr. David Minor in San Francisco. I also suggest that you start a new thread titled "Melanoma Specialists in Northern California" or something to get more recommendations. 

Thanks so much for the good ideas and info. I am on it!

MicheleM

kylez - (1/12/2014 - 1:08pm)

Hi Michelle, 

I've seen by 2 melanoma specialist oncologists at UCSF, Dr. Adil Daud and Dr. Alain Algazi. I recommend both of them. The oncologist I currently see is Dr. Algazi.

Dr. Minor is a melanoma specialist as well. One of his treatments for stage IV patients is biochemotherapy. He says he gets great results with it, which may be the case. On the other hand my docs at UCSF don't use it except in rare cases, where they might want to debulk large tumor burdens before other treatments. I hear good things about Dr. Minor from his patients. I chose UCSF in part because it is a teaching hospital/academic institution. I got my second opinions for my Kaiser treatments there in 2010, then switched insurers for 2011 forwards. UCSF also has excellent surgery, neurosurgery and radiation oncology departments.

Hope that helps.

- Kyle

Thank you to everyone able to post non-anonymously, it helps add to the sense of community!

Thanks, Kyle, that is terrific information. Really much appreciated. I like to idea of UCSF as well, will try to see if we can get referred there for sure . . . I have read about the biochemotherapy and it sounds like an awful process to endure . . . but of course none of this is much fun.  I hope you are doing well!   mm

MicheleM

I am new in this process as well...having axillary lymph node dissection next Thursday after positive SNLB a few weeks ago.. so not exactly sure if this helps.   The below link shows where the 5 skin SPOREs (specialized program of research excellence by NCI) in the country are. Although I'm sure any of the NCI designated cancer centers will provide excellent treatment! 

Trp.cancer.gov/spores/skin.htm

Thank you!  mm

MicheleM

POW - (1/12/2014 - 10:20pm)

Actually, the Specialized Programs of Research Excellence (SPOREs) program is not for treating patients. The SPOREs are a type of grant that institutions apply for. The money lets the institution hire people and purchase equipment that can be shared by many scientists studying various aspects of cancer (bioinformatics, statistics, immunogenetics, etc.). I expect that institutions that receive a melanoma SPORE have an excellent clinical melanoma treatment and clinical trials program, too. But the SPORE designation itself is not diretly related to patient treatment. 

Thanks POW!  I was thinking that was a possibility, but I wasn't sure.... although would have  been nice for me as I live where one of the SPOREs are located. 

POW - (1/13/2014 - 2:52pm)

Well, as I said, any institution with a melanoma SPORE is probably really good for melanoma treatment, too. Which institution are you interested in?

I'm in Pittsburgh,  so UPMC Hillman Center.  My fiance and I are not from Pittsburgh,  so we were thinking to get a 2nd opinion on treatment options when we get to that point just to make sure we do the right thing.  Boston is easy for us, but open to suggestions,  and waiting for next surgery results before researching too much.  Any insight is much appreciated! 

POW - (1/14/2014 - 10:40pm)

I love that you and your fiance are wise enough to wait until after the surgey to investigate treatment options. One step at a time is definitely the way to go.

At UPMC Hillman Dr. Ahmad Tarhini would probably be a very good choice. There are several excellent melanoma oncologists at Dana Farber and U Mass General, too. Let us know if you need recommendations.

Good luck with the CLND!!