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Just diagnosed stage 3

Just diagnosed stage 3

Posted By
Rob is grateful
3/26/2020 6:47am
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Replies: 12

Hello friends, I was recently diagnosed stage 3. I had a primary tumor that was 1mm with ulceration. My surgical oncologist, the medical oncologist and of course I were very surprised that 2 of the lymph nodes came back positive. They pulled 5 sentinel node and 1 had .2mm and the other a 3mm tumor that both were still encapsulated. My dermatologist ordered a test from castle bioscience that showed I was a 1a with least chance of recurrence. I go back on April 22 for all of my scans and discuss treatment. I’d love to know how people managed to get over the initial shock and stress. I’m a positive person and I’m looking at this as just another hurdle. Thank you in advance for your replies and motivation. Glad I cam across this forum. There are a lot of negative statistics out there and I’m hoping they are based on old data and not showing the results of more recent breakthroughs. I hope everyone is doing well
I’m praying for all of us. Rob

TimCT - (3/26/2020 - 8:59am)

Hi Rob,

I was recently diagnosed as stage 4 in February. My advice would be to not Google very much - a lot of the data you'll see is VERY specific (by their nature, studies & trials have to be) and the numbers and outcomes might not 100% apply to you, especially at this early stage of your treatment. Of course, even more recent data you might find is already outdated - Bubbles on here has a fantastic blog with tons of useful info and links to current and applicable studies and even more info, its definitely worth your time to seek that out, though I have a feeling she'll be responding to you soon!

While you're waiting to have scans done and discuss treatment, start looking for a melanoma specialist in your area. Its been stated in many places and in many ways that while general oncologists are great at what they do, it makes a difference to get the insight from someone who specializes in this disease, especially early on. Their knowledge of the latest treatment and trial options for not just melanoma, but for YOUR melanoma gives you the best chance of getting the very best care for your particular situation. Worth it, even if you have to travel for a consult. Knowing that you have many treatment options was the best medicine for me, right after my diagnosis. The thought of having a plan B and plan C was very comforting.

Thank you for your reply Tim. I am being treated at Vanderbilt by an oncologist that specializes in hematology and melanoma. Are there oncologist who specialize in only melanoma? I hope you are doing well and tolerating your treatment ok.

Bubbles - (3/26/2020 - 10:28am)

Hey Rob,

So sorry for what you are dealing with!! It is a crazy slap in the face to be given such a diagnosis, isn't it? Yes, it sound as though you are Stage III. If the scans you have scheduled are clear, that is where you will remain. Tim gave you some very good advice in looking for care with a melanoma specialist, or at least an oncologist who is well versed in treating melanoma patients - Stage III patients with adjuvant therapy in particular. As for me - Tim must have been reading my mind. I spent the morning putting a post together about adjuvant therapy in melanoma. Adjuvant therapy is treatment that is given when all gross melanoma has been removed from the patient by surgery (as your positive nodes were) or through radiation. The post includes a link to all current melanoma therapies that I put together as well as to an article doing pretty much the same thing, followed by a written description of where we've come with adjuvant therapy (pertinent additional links attached) and finishes up with slides reporting the story visually from a world renowned expert in the field of melanoma. Note: At the bottom of the primer I created (linked in the post) is an additional link to a "glossary of terms and acronyms" that you may also find helpful. I know you have been hit by a lot of terminology and crazy all of a sudden. But there is reason for hope!!!! You can do this. Hope this post helps. Ask more questions as you have the need. There are many caring smart peeps on this board.

Here's a link to the adjuvant care in melanoma post: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2020/03/adjuva...

Wishing you my best. Celeste

Thanks for your reply Celeste . I am eternally optimistic as I said. I know there are new treatments popping up what seems to be daily. How long have you been in this fight.?

Bubbles - (3/26/2020 - 7:09pm)

I was Stage IIIb in 2003. As there were no effective treatments at the time, I watched and waited after my initial lesion and positive nodes were removed. I advanced to Stage IV in 2010 with brain and lung mets. Surg to lung. Radiation to brain. Joined Nivolumab (Opdivo) phase 1 trial, adjuvant arm. Last dose of nivo in 2013. NED for melanoma ever since. Read the post I linked and the status of treatment options will become more clear. c

Thanks again, I’ve been soaking up all of the information on your blog. A lot of people, myself included, owe you appreciation for putting that together. There is much enlightening and informative data to see. Have you any thoughts on the castle bioscience test? Given my 1a classification I felt sure there would be nothing in my lymph nodes. Is that lower classification still pertinent with my rise in staging?
Rob

Bubbles - (3/26/2020 - 8:58pm)

Castle's testing has been discussed fairly often on this forum. You can look up those posts and comments using the search tab. Personally - I have very high hopes for many tests like ctDNA testing via a blood draw along with many others to help guide therapy, determine response or progression to a therapy, etc. However, I don't think much of particular value is learned with the Castle Bioscience test. But, that's just my take. C

tkoss - (3/26/2020 - 12:19pm)

Bubbles is our resident scholar, , with extensive knowledge and patient experience. So start reading her, and you will find you both sound science and advice to feel pretty good about your prospects.

i am strictly a layman, new to treatment and was naive somewhat. I should have been more persnickety with the docs because there has been confusion in delivery of my care. But you try to make friends with the people who have your life in your hands. The complexities of the disease are like a rubik's cube to decipher so educate yourself especially on the terminology.

I

with a 3c diagnosis, after the initial shock, i settled in to a pretty positive outlook and nothing i have experienced makes me think recovery it not in the cards.. My docs suggested since they found no metastasis beyond the SLN I am less likely to continue to metastasize. Bubbles can confirm that or the adverse.

i repeat often because not everyone reads every post. I am 3c, 4 lymph nodes removed, on nivo for 4 rounds of treatment and no side effects. i showed hi liver enzymes pre-infusio. My Derm insisted i not take aspirin in advance of a locals excision of a non-met mole so i substituted Tylenol and I am hoping the liver enzymes are a temporary side effect i went no pain killer and we will see if i get to continue on nivo next week.

BTW and importantly , the Derm called and said our Governor said i can't have the mole excised so that was canceled. So Covid strikes in one way or another.

Thanks for your reply, sounds like we are in a similar fight. I look forward to sharing our positive outcomes together. What made you stage 3c?, I’m thinking I may be stage 3a as of now. Just trying to learn as much as I can

tkoss - (3/30/2020 - 3:24pm)

stage 3c is when the melanoma moves into lymphatic system and the primary tumor is either ulcerated or not, and one thickness or anohter. in other words its a definition useful to , well , i dunno who exactly.

the main issue it its in the lymphatic system and the current standard of care is mono therapy with nivo or premb.

here is a thorough description but frankly i find it confusing: https://www.aimatmelanoma.org/stages-of-melanoma/stage-iii-melanoma/

SABKLYN - (3/26/2020 - 12:57pm)

Hi Rob,
I had a very similar experience with my biopsy and SLNB. All involved said they were 90% sure I would have no additional disease (other than the original lesion on my lower leg) then I received the result; 2 positive lymph nodes and t no additional cost... a diagnosis of stage 3A. I had a complete lymph node dissection (left groin) and like you initially was dealing with anxiety. I put myself on a regular exercise routine, kept busy and led my normal life. After several weeks, my anxiety diminished and I am very thankful to say October will mark 10 years since my diagnosis and I am still NED. As the other esteemed members of the board suggested, get yourself a melanoma specialist, understand the adjuvant therapies available and ask all the questions you have about those therapies and the best choice for your particular melanoma. After beginning my journey at Emory, I decided to be treated at Sloan Kettering. Both my surgeon and melanoma specialist always had time for my questions, openly discussed my situation and were not only extremely knowledgeable, but also brought me a sense of relief. Anyway Rob, sorry you had reason to join but know that you have a great group people who can give insight regarding available options and assist in dealing with the emotional roller coaster of dealing with this.

Regards,

Stan

Stan,
Thanks so much for your reply, I’m glad you are doing well and congratulations on being 10 yrs disease free. I hope we both stay that way. It sounds like we were in similar situations. I go back in a few weeks for my first scans. I am being treated at Vanderbilt by a great oncologist. Vanderbilt uses a team approach with multiple oncologist and is a research hospital. Its well worth the 3 hr drive for me.
Rob