Follow-up Tests - Is PET scan only sufficient?

Dobermom Member Posts: 40
edited March 2014 in Skin Cancer #1
For all you melanoma survivors out there, I have a question. What scans/tests do y'all receive for follow-up care, and how often do you receive them? Do you feel it is sufficient?

I'm still in my first year of treatment. I had a cutaneous melanoma removed from my back shoulder region in 1992, then nothing more for 17 years. Then this past July a lymph node under my right arm suddenly "popped" up seemingly overnight. (When I asked the radiologist who did the ultrasound & core-needle biopsy, she told me it was about the size of a plum!) I got a lecture about doing self-breast exams, since a lump this big would have been hard to miss, but I do them! Breast cancer runs in my family, plus I'd already had one run-in with skin cancer - I know to watch for swollen lymph nodes. (And honestly, I thoroughly wash, then shave that area every morning, it's not like I would have missed a mass that large!) That THING came out of nowhere. I went to bed one night feeling fine, and when I woke up the next morning, it hurt to lower my arm, and there was this big mass that hadn't been there before. Best we can figure is it had "hidden" behind the muscles in that area until it was just too large to hide anymore. That's why it seemed to appear overnight - it DID "appear" overnight. (It's also why that area was so sore the next morning.)

We have never found a primary skin cancer this time around, so the oncologist (who does NOT specialize in melanoma, but is head of research at the local cancer center, and has been in contact with a melanoma specialist in a nearby city asking about clinical trials, etc. in case I qualified) is assuming it is a skin cancer cell left over from 17 years ago that has been sitting dormant since then and something triggered it. Of minor concern to him is that my skin cancer was on the LEFT back/shoulder, while the lymph node affected is under the RIGHT arm. Then I explained to him just how WIDE an excision the surgeon had to take in order to get a clean margin because he apparently found some cutaneous metastases. This seemed to "prove" his theory to him.

My oncologist seems to find me a curiosity - the 17 years between initial onset and metastases to the lymph is a rarity apparently. One which we both hope happens again! He's "Dr Positive", so he won't tell me the true likelihood of that happening, however. He wouldn't even stage my disease - said he doesn't like to put a number on things like that. We had to explicitly ask him, and even then he didn't answer definitively. He said depending on criteria used, he could stage it either stage III or stage IV. Going strictly by the treatment protocol I'm receiving, however (surgery + interferon), I'm a stage III. I just don't know what level of stage III.

According to the oncologist, since the core-needle biopsy confirmed melanoma, SLNB was necessary. A complete lymph node dissection was done by default, and I am now about half way thru my year of interferon treatments. So far, I've had three PET scans. Other than the first one (done pre-operatively to look for other metastases), they have all been clear, and I am currently NED (thank God). I have some issue with my oncologist's office as to the schedule being used for my PET scans, as they have been inconsistent and I can't actually pin down a schedule. The "standard" I have been able to find is every 3 months the first year. And it looked like that was what they were going to follow, as my 2nd scan was 3 months after the 1st. However, when it was time for my next scan, and I asked about it, my oncologist replied that "since your last scan was so beautiful", he felt we could postpone my next scan for "awhile". I was so shocked, I didn't even think to ask how long "awhile" was! I was still trying to puzzle out how a "beautiful" scan justified delaying my next scan! So scan #3 ended up being 5 months after scan #2 (I ended up asking the nurse practioner, who seemed a little upset that it was 5 months since my last scan). When I finally get to see the oncologist again, I'll be asking him about follow-up care, including the PET scan schedule. Especially since the cancer treatment is undergoing a massive amount of cost-cutting initiatives (you would think something that generates revenue wouldn't be affected, but who knows - it could be the insurance companies directing some of the cuts).

I've read so many things about how scans aren't necessary, and that some cancer centers actually don't do them at all. Then I've read scans ARE necessary, but that PET scans alone aren't enough because they aren't sensitive enough to detect brain and/or lung metastases. That you also need MRI and/or CT scans of the brain and lung.

Personally, I'm on the side of doing the scans/tests. In my opinion, melanoma is too sneaky and often too aggressive once it gets a foot-hold not to be vigilant. We have so few drugs that truly work, and they don't even work on everybody. We all deserve all the time available to find the drug combinations that work for us! I don't want to die, and I want every minute of every day to fight for my life!

So, back to my question (sorry for the wordiness - it's a problem of mine!): What scans/tests do all y'all get, how often, and do you feel it's enough?


  • washoegal
    washoegal Member Posts: 45
    scans I will be required to have
    I am a 3b or c melanoma patient only 2 1/2 months out of surgery. All my lymph nodes were removed under my arm after 2 nodes were positive for cancer. I was told I would need to have a PET scan and a CAT scan in 6 months. I am seeing someone who specializes in skin cancer so I feel pretty confident in this.
  • washoegal
    washoegal Member Posts: 45
    I am assuming you have a really good dermatologist and have seen him/her recently to make sure that the melanoma found in you lymph node isn't from a different site than the original one!
  • Dobermom
    Dobermom Member Posts: 40
    washoegal said:

    I am assuming you have a really good dermatologist and have seen him/her recently to make sure that the melanoma found in you lymph node isn't from a different site than the original one!

    Absolutely! I have a dermatologist I'm currently seeing every 6 months. I've had several moles removed - at my request. HE hasn't found any he deems worth removal, but he lets me point and say "Remove, please!". Thus far, two of them have been abnormal, but none have actually been melanoma.

    All my moles are small, and look rather like freckles, but given my extreme paleness, obviously aren't. And NONE have ever reached that magic "pencil eraser size", not even my first mole that WAS melanoma. In fact, getting that one removed took over 2 years because every doctor who saw it (including a dermatologist) insisted it was normal looking and nothing to worry about. My complaint was that it itched - the dermatologist told me to put lotion on it! The doctor who finally removed it said we'd tell the insurance company that my bra was irritating it in order to get them to pay for its removal and biopsy (thank God he sent it off for biopsy!). Instead, it turned out to be melanoma. I'm convinced that doctor saved my life aby agreeing to take that mole off. Because it turns out that little mole had already sent out a few satellites through the skin (but not to the lymph nodes - an MRI cleared those) - the surgeon ended up doing a much wider excision than even he expected in order to get clean margins. But he did it, and I somehow ended up cancer free for 17 years.

    Because none of my moles have every passed the size criteria in the classic ABCDE test, I follow the newer "ugly duckling" test. If it doesn't look like any of my other moles, it comes off. So far, the two moles that were abnormal were the two very small black moles that I insisted had to be removed. The other moles proved to be OK, so thus far, color seems to be the deciding factor for me as far as "ugly duckling" goes, but I figure better safe than sorry! If it looks abnormal, it's coming off! (That does not mean I won't continue to evaluate moles by the ABCDE rules - if one ever comes under that criteria, it will go as well!)
  • Mountain Mama
    Mountain Mama Member Posts: 1
    Dear Dobermom,

    For the first 4 years of my treatment for Stage 4 melanoma I had a CT scan every 3 months and a PET scan every 6 months. I now have 1 CT and 1 PET per year. I also have an MRI of the brain once a year. The lesions in my liver disappeared 2 years ago.

    As much as I hate having these scans because the stress of wondering what the results will be is overwhelming, I thank my wonderful Oncologist for being so diligent. Early on in my "adventure" with this disease I went 6 months between scans when I should have had one in 3 and that is when the metatases was found.

    Best of luck to you in your fight. It is scary and hard, but do be an advocate for yourself and follow your instincts.
  • mh1229
    mh1229 Member Posts: 22
    I am stage 3. I get s scan
    I am stage 3. I get s scan every 3 months along with blood work. I am in a clinical trial so it i sall stepped up a bit for research reasons and it is like clock work. Not a date is missed.
    I feel it is abit overkill, but still in my comfort zone.
  • Zod66
    Zod66 Member Posts: 28
    Follow up
    Stage III survivor just past the five year mark. The first five years I had a PET/CT (one machine could do both) every 6months. Now that I'm at the five year mark I'm scheduled for one PET/CT each year. I see a dermatologist every 6months for a full body go over and I've gone sooner when somethings concerned me.
    Only time I had an MRI done relating to this issue was when first diagnosed and it was only of my head to look for any tumors in the brain. All they found was a pretty picture of a butterfly.
  • tkmom
    tkmom Member Posts: 2
    PET scans
    Dear Dobermom,
    In 2009 melanoma was found on my foot. At first I thought OK we'll get through this, my lymph nodes were clear and we go on... during my surgery they removed another mole and it too was positive for melanoma. So another surgery and lymph node removal. Now I'm not feeling so sure everything is so great. They were going to send me on my merry way saying my lymph nodes were clear so you are good to go. I was thinking what's to say there isn't something growing inside where you can't see it? I pushed for a PET scan. My Dr. was good enough to get one ordered for me. They have to follow standard protocol... if your lymph nodes are clear you don't need one. I had things show up in my PET scan that needed to be taken care of.( enlarged lymph nodes in my axillary area, (and you are right you can't feel them) and a lump in my breast. these things would have gone undetected had I not pushed for the PET scan.) I am a firm believer that every melanoma patient should have a pet scan when first diagnosed and every year thereafter. I don't now how to make that happen. It will be 2 years in October since I was diagnosed and I would like to have peace of mind that nothing has changed.

    I know of someone like myself that had a mole removed and her lymph nodes were clear and 1 year later it was in her liver and lungs and brain. They didn't do a PET scan upon diagnosis and her Dr. only did one on a whim at her 1 year check up. Now she is fighting for her life. You can see her care page Jillian Hayes if you are interested.

    Anyway I saw my dermatologist and my surgeon every 3 months for the first year and every 6 months the 2nd year. I would still like to have a PET scan I don't know if I can get my Dr. talked into one or not. Maybe if I bring up Jillian Hayes, after all she and I share the same Dr.

    So back to your question... I don't think we get enough scans If there is a way to change that I want to help!!

    take care
  • sgrstan
    sgrstan Member Posts: 1
    Scans for melanoma

    I am concerned that our health insurer has a policy of not permitting PET scans, in favor of chest x-rays, CAT scans and brain MRI tests.   My wife's oncologist had a "peer to peer" discussion with our insurer to appeal this, but did not prevail. (A prior insurer paid for the PET scan at the time of the initial diagnosis.)  Has anyone had a similar experience?  Thank you.