Urgent advice needed on supraclavilcular met

pollytilly · New User Joined: 28 Oct 2009 Posts: 2

Hi
My husband has melanoma in his left axillary nodes and also in his supraclavicular nodes. He's having an axillary excision on Friday but the surgeon has told us via a specialist nurse that he won't be able to remove the affected supraclavicular nodes at all.
Has anyone else had melanoma in this area? What treatment options have you been offered?
Isn't it like having a ticking time bomb to leave them there?
Anyone got any thoughts?
Can anyone recommend a surgeon (UK) that may be able to offer a second opinion?
Thanks from a very worried wife!

brainman

Hi pollytilly. I am so sorry about your husband's Melanoma. Unfortunately, I do not have answers to your questions. So many things can make one person's cancer inoperative while the cancer of someone else can be removed. It is best to ask his own doctor for an explanation.

It is like a time bomb Sad

. Even if he had surgery and removed all of the affected nodes, it could still come back somewhere else. Since it has already spread, he will have to take some form of chemotherapy.

Sorry that I cannot be more specific. You and your husband are in my thoughts and prayers.
_________________
Jim
Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendroglioma grade 3, same location.
http://cancerforums.net/viewtopic.php?t=2405
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HaoleBoy · Senior User Joined: 19 Aug 2008 Posts: 108

Polly, I'm an American writing this from Hawaii and am a Stage IIA melanoma patient (diagnosed 1 August 2008).... I know the medical systems in our two countries are substantially different and that the protocols for treating melanoma are somewhat different as well. Assuming that your husband is being treated in the NHS and further assuming that the NHS allows 2nd opinions (as a Yank, I don't know), I would definitely want a 2nd opinion on the supraclavicular node, and I would want to find out why the first doc believes he can't excise the node(s) there... If he believes it is too close to the jugular vein for his comfort, there are other Docs who may have the skill to perform the surgical procedure ......

Polly, if you don't mind my asking, were the metastatic lymph nodes discovered in conjuction with the initial treatment, or is this a recurrence of previously resected melanoma ? I ask because I know the British public health system has not yet bought into the Sentinel Node Biopsy procedure for pathologically determining the status of the regional lymph nodes for melanomas diagnosed as thicker than .75mm - 1mm, which is standard of care in the U.S.....

Did the Doc determine the status of your husband's nodes by Fine Needle Aspiration and pathological examination ?... by ultrasound ? or by palpation and clinical diagnosis ? If it is by either of the last two procedures, I would seek a pathological determination of the nodes.... and if a lymph node is big enough to be palpated and felt, it is surely big enough to be skewered with a Fine Needle for pathological biopsy (I've had 2 X FNA procedures).....

Leaving a metastatic lymph node in place is not the treatment protocol in the U.S. ... Conventional American wisdom is that a node with even melanoma micro-mets will eventually present with clinically apparent disease and possible further metastases....However, from reading some of the articles by Dr. Meirion Thomas at the Royal Marsden Hospital (in the British Journal of Cancer and Thomas's blog), I know there is a school of thought in British melanoma treatment circles that not all metastatic lymph nodes go on to further metastatic spread -- that the patient's host immune system can keep the disease in check .....

Polly, you may want to ask about the reasoning behind the doctor's decisions and beliefs, and what he thinks will be the natural path of your husband's disease given the treatment regimen.... I would also ask about adjuvant treatment and begin to check out the possibility of enrolling in a clinical trial; however, please note that some of these trials may require resected melanoma -- it depends on the trial....

I made some posts yesterday which may interest you in regard to ongoing clinical trials involving Stage III disease .... I would also ask your doctor to test your husband's melanoma mets for the B-RAF genetic mutation and inquire about the possibility of a vaccine treatment... Also, if your husband hasn't already done so, he may want to be tested for the HLA-2A haplotype (simple blood draw)... Some of the vaccine trials require this specific leukocyte antigen....

I'm terribly sorry that your husband and you have to go through this ordeal.... Prayers, Blessings, and Aloha from Hawaii...

Hawaii Bob

pollytilly · New User Joined: 28 Oct 2009 Posts: 2

Thanks to both of you for taking the time to respond to my post.
It was very interesting to read about different US expectations.
This is a recurrence for my husband. He was diagnosed last year with a 1.26mm melanoma on his top left trunk- the clinical opinion was that there was no ulceration, but I think it had just started to look blistered. It was removed for biopsy, with a wider excision performed several months later. No SNB was performed. No ultrasound or scan of any sort was carried out.
One month ago my husband felt a lump under his left armpit, about the size of a small marble. Within a week it had become approximately 4cm wide, but it is no longer spherical, more like a low dome. He had a fine needle aspirate and the results have confirmed melanoma.
He had a CT scan done and while we were waiting for the results he also found a lump in his left supraclavicular region. The CT results confirmed that it was also melanoma. The CT scan identified a 4cm mass on his liver, but a follow up ultrasound showed this as a simple cyst. I am not sure how accurate ultrasounds are, I asked if the nurse if we should take the precaution of a liver biopsy, but was told it would be uneccessary.
I think he may also have a lump forming on his left cheek - but maybe I am being paranoid.
What methods are there for measuring rate of spread? Things do seem to moving pretty quickly.
Thanks so much for your responses. I've been watching the forum for a while and can see how much time and effort people take to reassure each other. It's truly inspirational!

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