New diagnosis

Posted By
cammeronwall
6/17/2017 8:41pm
View other posts by
Activity
Replies: 10

Hi, I'm Cammeron from Ga. I was just diagnosed with Stage 3-- pT3a ( at least)...they are sending me to an oncology surgeon in macon. From there we shall see what the next step is. The biopsy showed 3.1mm at least in depth on my right temple.. I love how they use the word at least...Yes, everyone is different but what should I expect to happen next? How long do tests / blood work take to come back? I had an odd mole I never had checked out for about three years until it started getting pointy and actually looked like basal cell, and a black spot on my stomach. I was a tanning bed lover for 20 years and now I am paying the price. Any info or words of encouragement would be awesome as I am new and we have two children. 9 and almost 2. I'm a teacher and I really hope treatments whatever that may be or surgeries--however long that takes will allow me to continue teaching. I have really good health insurance and love my career. Cammeron

Jahendry12 - (6/17/2017 - 9:13pm)

Hi Cammeron. You have come to the right place for support and understanding. Sorry you are faced with this beast called melanoma. One word of advice would be to make sure you are seeing a melanoma specialist. As many others will tell you, it's key to have a doctor that is an expert in treating melanoma. Here's a link to find a specialist in your area. https://www.aimatmelanoma.org/living-with-melanoma/find-a-melanoma-speci...

There have been many advancements in treating melanoma in the past 6 years. You can search this site for much information. The people here are awesome and some very knowledgeable. 

Blood work results are usually pretty quick. An hour or two. Scan results can be a day or two. 

Im sure others on this board will chime in.  Keep us posted and I wish you the best. 

cammeronwall - (6/18/2017 - 10:29am)

Thank you, I've been on the link since you sent it! 

MichelleRHG - (6/17/2017 - 9:55pm)

Yes, definitely find a melanoma specialist...someone who treats only melanoma. A general oncologist cannot keep up with the research, trials and rapidly changing (and improved ) treatments. I found this out a little late . I get my infusions locally but surgery, biopsies, consultations and treatment plan at MD Anderson. Some insurance companies consider MDA an in-network provider!You can,use the search option here and get many answers as well as the blog by Celeste (Bubbles) She has organized SO MUCH information on her blog . Use the sesrch bubble at the top of her page. Many people continue to work during treatments. Good luck to you.

jennunicorn - (6/17/2017 - 10:33pm)

So sorry you're going through this, the beginning is the scariest, but hopefully this forum can help you plan on what to expect and ease some anxiety for you.

You don't know your stage yet, since you will need a sentinel lymph node biopsy first, that's where the surgeon comes in, they will explain in more detail how that works. If there is melanoma found in the lymph node(s) but your PET or CT scan is clear (meaning no tumors on organs and/or other areas) then you would be stage 3. If your lymph nodes are clear, no melanoma, then you would be stage 2A. For a better understanding of how the stages work, this site is good: https://www.cancer.org/cancer/melanoma-skin-cancer/detection-diagnosis-s...

Until you know those results, there isn't much else to do, and we can cross the bridge of treatment options if you need to (only if your lymph nodes are postitive for mel). If your lymph node biopsy does show melanoma, then you would definitely want to find a melanoma specialist (oncologist who only sees melanoma patients) as they know this disease far better than a general oncologist.

All the best,

Jenn - stage IV - Ipi/Nivo (Yervoy/Opdivo); Completed a year of infusions and surgery to remove last tumor

miaka618 - (6/18/2017 - 9:47am)

I too had my melanoma on my right temple. I agree with everyone here. Get a specialist. Also, you need to stay on top of your insurance. From here on out it's going to be a whirlwind of tests and surgeries (depending on whether your sentinel nodes are positive or not).

If you want a more detailed look at what will be next I documented everything on Facebook in a photo album. I'm sure your experience will be similar since it is in the same area.
https://m.facebook.com/april.symoens.miaka618/albums/10207868308618931/?...

~April

cammeronwall - (6/18/2017 - 10:26am)

Thank you for sharing. That really puts it in perspective for me. Waiting to get tests done is nerve racking. The pictures are amazing . I need to do that too. It really lets people see the truth about what you're dealing with. 

miaka618 - (6/18/2017 - 1:48pm)

I'm glad it helps you out! I know when I first started this I searched everywhere to learn about what was going to happen next.

~April

SABKLYN - (6/18/2017 - 9:57am)

Hi Cameron,

The first thing they would do (and presumably have done) is a sentinel node biopsy.  This is how a determination is made with respect to staging, at least initially.   Once that's done, if you are determined to be 3A per the biopsy, they'll likely do a PET scan to rule out any further progression.  Afterward, depending on all the gathered results, you'll discuss a treatment plan with your oncologist.  This can include "watch and wait", complete lymphnode dissection of the affected lymphnode basin, and potentially other therapies which can include potentially immunotherapy.  

Hang in there and keep us posted.  Good luck!

SABKLYN - (6/18/2017 - 9:57am)

Hi Cameron,

The first thing they would do (and presumably have done) is a sentinel node biopsy.  This is how a determination is made with respect to staging, at least initially.   Once that's done, if you are determined to be 3A per the biopsy, they'll likely do a PET scan to rule out any further progression.  Afterward, depending on all the gathered results, you'll discuss a treatment plan with your oncologist.  This can include "watch and wait", complete lymphnode dissection of the affected lymphnode basin, and potentially other therapies which can include potentially immunotherapy.  

Hang in there and keep us posted.  Good luck!

Patina - (6/18/2017 - 1:53pm)

Hi Cammeron,

Sorry you are dealing with this, it can be tough, but things have changed substantially in the last few years and there is a lot to be optimistic about despite the diagnosis...

Here is what I tell everyone: go to a center of excellence if you can, make sure you have a melanoma specialist (this is someone who primarily see's melanoma patients), make sure that you get CT scans, Pet Scans and a MRI of the brain, along with being tested for BRAF and that your doctor reviews the scans with you even if the radiologist says thing are clear with the brain, talk about a plan and then make a second and possibly third appoint with other specialists. (And get CDs and copies of all records to keep with you and take to appointments.)  - And make sure that you have followup MRIs of the brain on a certain schedule when in treatment.

In the past, something like 40% of the time melanoma will spread to the brain. For this reason I recommend that when you are looking for a doctor that you also find one associated with a good team a radiation oncologists. - With the new drugs this number has likely decreased.

The most important thing in all of this is to make sure you or a someone who goes with you to your appointments is great at taking notes and research. You or they can't be a passive participant in this, its not helpful.

The reason I mention the above is because my Mom was diagnosed at Stage IV without brain mets. - We found out about 3 weeks later than she had 3 brain mets and even I could see them on the MRI!  She went through 4 specialists and the 3rd found the mets, the other doctors never looked at the scans, but read the radiologists reports.

She went with her 4th melanoma specialist and his plan and treatment was at 2 facilities for about 4 months. 4 months in we knew she was doing excellent with the treatment (ipi/Yervoy), as the melanoma in her lungs, liver, kidney, adrenal gland, neck and scalp were all shrinking...But she was still getting brain mets and the neuro-oncologist said we shouldn't get treatment when a large met was found and he said he was "in a wait and see mode..." Her oncologist (and I) thought she needed another opinion and a new radiation oncologist saw here the next day. - He discovered the first radiation oncologist missed a brain met when she had had her gamma knife radiation treatment 4 months earlier and she had at least 5 new mets that could be treated.  8 days later she was treated for 17!

My Mom is 81 now and you'd never know anything happened and she is as active as someone in their 60's...  We would not have this result if we hadn't made sure we went to a few doctors and were looking at trials, or if we had stuck with the original radiation oncologist...  It's always good to question...

Good luck!