Surgery Question

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Respman
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Surgery Question

Post by Respman » Wed Jun 06, 2018 1:53 pm

I was diagnosed with melanoma on my back 8 years ago. It was excised with no other therapy or symptoms. A month ago I had a CT to look at a bulging cervical disc due to pain I was having in my left shoulder and down into my hand. The CT caught a hole in my occipital skull from a lytic lesion. An MRI showed a large tumor adhered to my cerebellum through the hole into my neck. A full trunk CT showed heavy inflammation in my upper left chest and armpit. Needle biopsy was suspicious but negative. After surgery to remove the mass in my head, a PET scan was ordered that had lymph nodes sub pectoral and axillary lit up like the sun.

My radiation oncologist has set me up for radiation to the site in my head and wanted to have the lymph nodes removed before radiating my left upper chest area. The general surgeon I saw seemed to be out of her comfort zone with the sub pectoral excision and just wants to do the axillary nodes. The sub pectoral nodes are putting pressure on the brachial plexus nerves and causing all this pain in my chest shoulder and arm and I really want the nodes out. The surgeon said the nodes can stay and just be radiated. My neurosurgeon and radiation oncologist disagree and want the nodes out as well. I am looking for a second opinion on this. Is it common to leave these particular lymph nodes and just radiate them? If they can be removed, should they be? I'm interested in everyone's opinion on this. Hopefully seeing the surgical oncologist next week for the second opinion. Just want better pain control. Hate being on these narcotics.

Catherine Poole
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Re: Surgery Question

Post by Catherine Poole » Thu Jun 07, 2018 8:46 am

I am sorry to hear about all you have endured. You sound very on top of things and correct in wanting another opinion. Where do you live and what travel could you take? You can also email me personally: cpoole@melanomainternational.org or call our helpline: 610-942-3432. This is complicated and needs to be evaluated by someone very judicious in their thinking.
Catherine M. Poole, President/Founder
Melanoma International Foundation

Respman
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Re: Surgery Question

Post by Respman » Thu Jun 07, 2018 12:05 pm

Thank you for answering. I live in Jacksonville, Florida, USA. I have access to Mayo, MD Anderson, and Shands UF. The surgical oncologist I will be seeing for the second opinion is with Shands UF and has a very good reputation. Her name is Christiana Shaw, M.D.. I am hoping to see her next week. My oncologist and radiation oncologist are with Cancer Specialists of North Florida. I have been happy with everyone so far except for the general surgeon who was not with the group.

Catherine Poole
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Joined: Wed Jan 02, 2008 12:09 am

Re: Surgery Question

Post by Catherine Poole » Fri Jun 08, 2018 12:21 pm

We work a lot with Dr. Richard Joseph at Mayo Jacksonville. He has an excellent team there that specializes in melanoma.
Catherine M. Poole, President/Founder
Melanoma International Foundation

rosa11
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Re: Surgery Question

Post by rosa11 » Fri Jun 08, 2018 12:34 pm

I live in Jacksonville, Florida and I see Dr. Richard Joseph at Mayo.

Catherine Poole
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Re: Surgery Question

Post by Catherine Poole » Sat Jun 09, 2018 7:04 am

I believe he is a great melanoma specialist. We've worked together for some time.
Catherine M. Poole, President/Founder
Melanoma International Foundation

Respman
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Re: Surgery Question

Post by Respman » Sat Jun 09, 2018 10:44 am

Thank you. I had a little frustration episode late this week. I had heard my Braf results through contacts but had yet to get a call from the oncologists office to discuss the results or immunotherapy options. I was still waiting to hear when I would start my radiation on my head and UF sent my referral to the wrong doctor for the surgery delaying that appointment 2 weeks. I spent Friday fixing that and calling for the other appointments. I just felt like my oncologist should be calling me. I've had the pain from my lymph nodes for 6 months and still haven't started any therapy. I now have an appointment to see my oncologist on Wednesday so hopefully we can get started.

Rosa11, do you feel like Mayo and Dr Joseph communicates well with you? Have you ever felt like you were being ignored or forgotten? Maybe it's the manager in me, but I like to know what's going on at all times and I have worked in the medical profession long enough to know that many times you aren't being called because somebody dropped the ball. Of course when you call them the answer is always "we were just getting ready to call you". Once the plan is started, I understand things take time and I won't get a call every week, but when there are so many things to be done that haven't started and I haven't heard from anyone about test results that came back over a week ago, that's too long for this particular diagnosis. Mayo is convenient to me. I may look into Dr Joseph. Thank you for the information.

Catherine Poole
Posts: 11045
Joined: Wed Jan 02, 2008 12:09 am

Re: Surgery Question

Post by Catherine Poole » Sun Jun 10, 2018 7:09 am

I can add my two cents that I have referred patients to Dr. Joseph with confidence for a few years now. He is smart yet personal and judicious in his treatment. He looks at the whole person as well. I have not had complaint yet, only compliments in his approach. He is also very current with research. I hope you get the treatment you are looking for.
Catherine M. Poole, President/Founder
Melanoma International Foundation

rosa11
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Re: Surgery Question

Post by rosa11 » Mon Jun 11, 2018 6:26 am

I've been seeing Dr. Joseph for a few years now and never had any problems. As far as communication, if I have any problems/questions I always email him through the portal, and he always replies within the same day. If he's out of town, someone else will handle the issue and reply. You are not left "hanging". Before going to Mayo, I was seeing an oncologist at Baptist but I had too many problems with him, his staff and the hospital. I then decided to switch to Mayo, and it's also very convenient for me as I live right a few feet away from it. In 2014, I did have to have a craniotomy, and the surgeon was Dr. Michael Petr. He was outstanding, I highly recommend him. Back then, he was affiliated with Lyerly Neurosurgey, located downtown Jax next to Baptist, but I'm not sure if he's still there or not.
But anyway, I made the move to Mayo for my care and I don't regret it.
Wishing you the best.
Rosa

Respman
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Re: Surgery Question

Post by Respman » Mon Jun 11, 2018 6:44 am

Thank you for sharing your experience with me. I will definitely try Mayo if this oncologist doesn't work out.

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