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Introduction: Lisey and Hubby

Introduction: Lisey and Hubby

Posted By
LIsey
12/3/2019 1:07pm
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Replies: 5

Hello all,

I'm a melanoma survivor from almost 10 years ago (right knee, stage1) . I also had breast cancer 3 years ago. (Stage 1 as well). My husband had melanoma last year on his left shoulder, now his left neck lymph node is huge within the space of a month. He was not being followed for Melanoma by anyone but our dermatologist.

So today he goes in for a CT, but I'm expecting the worst... I only know the stats from 10 years ago and I'm hoping things have improved.

I joined this board to get information and support for both of us. We have 3 kiddos we gotta raise.

Thanks for your time,

Lisey in CO

Sorry for all that you have dealt with already, Lisey!!! Hopefully, your husband's swollen node is due to something other than melanoma!!! Luckily, things are very different in melanoma world today compared to where they were 10 years ago. Drugs we only dreamed of back then began to be FDA approved in 2011 , changing the entire treatment plan and outcomes for melanoma patients!!! Here is a primer I put together regarding those treatments: https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/08/melan...

Fingers crossed that you will not have the need. However, if you do, that info along with the wisdom and support from many wonderful peeps on this forum may be a good starting point for understanding what treatment options are available and a good jumping off point for further discussions with your docs. Wishing you and your husband my best. Celeste

LIsey - (12/4/2019 - 7:55am)

Thank you for your responses. The CT came back with 'Carotid Body Tumor" which means it's a large tumor wrapped around his artery in his neck. What are the odds it's the same side as the melanoma. I'm thankful it wasn't melanoma in his lymph, at the same time, we are now dealing with a very scary surgery and potential malignancy.

I still plan on checking in to learn about the new treatments. Every single bio family member has had melanoma on my side, except my mother. And the fact I married a guy who gets it as well.. geesh.

Hi, Lisey! I'm also the wife of a melanoma patient living in Colorado. This is a great group for information and support!!

Strength and Courage,

Susan

HI Lisey,

First, you have all our support, so sorry for what you have gone through and now what your husband is dealing with. and those are some interesting odds that you mention for sure, being a survivor yourself (and your family) and your husband having it as well. Speaks to how prevalent melanoma is as well, scary. I now have had two people in my family with a stage 4 melanoma diagnosis. I'm sorry to hear the finding on the CT scan and not sure what next step is to confirm exact nature of the growth, (biopsy before resection or are they removing it then doing pathology). But since the CT scan specifically mentioned a name "Carotid Body Tumor", I was looking into this and here is a link to Weill Cornell site about these that has some quick information: https://weillcornellbrainandspine.org/condition/carotid-body-tumors It's interesting, this mentions that these Carotid Body Tumors often arise in people that live in altitude, so they think hypoxia or lack of oxygen might be a factor in these growths. It is rare though, but seen more in those living in high altitude. You mentioned you live in Colorado, are you at high altitude?

I would recommend that you research top vascular surgeons with experience with these tumors since this around the carotid artery and is somewhat rare, the surgeon will be key. From what I briefly read, there is very low rates of malignancies which is a positive and surgical outcomes seemed to be good. Here is one example from cases at Baylor University from 2000-2015, and this seemed to be the same in other literature as well at other large surgical centers: https://www.tandfonline.com/doi/pdf/10.1080/08998280.2016.11929343?needA...

Many hugs, life just keeps piling on sometimes.
Jackie

Jackie <3

Oh and by the way, ditto to what Bubbles said. The treatments for Melanoma have changed drastically in the past 10 years, whole new ballgame with treatment.

Jackie <3