please comment. I need insight.

Freckles88

I was diagnosed with stage II melanoma while I was 7 months pregnant with my son in January of last year. I had a wide excision of the area on my right cheek about the size of a half dollar and a biopsy of the sentinal lymph nodes. My results came in clean, the cancer hadnt spread to the lymph nodes and I was given instructions for follow up care to have a pet/ct scan once a year for the next 5, labs every 3-4 months with my oncologist and a full skin check every six months with my dermatologist. At the time of diagnosis I was living in upstate new york, I have since relocated to the town I grew up in, in Vermont. I had my first appointment with my new oncologist yesterday who told me that he didnt find regular pet scans or any pet scans necessary at all because I'm only 23, the area was completely resected and my cure rate is 80% he says he's confident that I should be fine with only doing labs and following symptoms for the next four years because he doesnt see the need to "blast me with so much radiation" that might cause problems for me down the line. My problem is this..the mole on my face looked nothing like cancer. it was perfectly round one solid color brown, it never cracked, bled, hurt or itched..the dermotologist who removed it from my face even told me it was nothing and had to call me a week later eating her words as she brought my world down around me telling me it was cancer...so how am I to monitor symptoms if there arent any? if it hadnt been for my vanity wanting a mole removed, I probably never would have known until it was too late. I understand where the dr. is coming from, but at the same time I am unsettled..I didnt have a clue the first time so whats to say that wouldnt happen again? with a perfectly normal looking mole or god forbid the original cancer comes back? I would want to know right away, I mean its all about early detection, right? when I expressed these concerns to him he told me simply that if the cancer reccurred it was highly unlikely that it would be curable and early detection would do nothing to help my odds or the outcome....What??!! really??! does that sound right to anyone? I mean if it did recur wouldnt it be better caught early so that we could get right on to treatment? chemo, radiation, interfueron, il2, all that jazz? I dont understand..wouldnt early detection help me if it recurred? I'm confused and afraid..I dont understand why this oncologists plans for follow up treatment would differ so greatly from my original oncologist and I want to make sure Im doing the right thing..So I'm doing my homework and getting advice and opinions from anywhere I can to make an educated desicion. If the pet scans are unecessary, then obviously Id rather not put myself through it with he risk of side effects worse than the original disease I mean if he's right and early detection of reaccuring cancer doesnt really matter in the long run..but I'm not sure..it just doesnt seem right to me...I'm just not sure..any insight would be greatly appreciated

dearfoam

I'd find another doctor
Even if recurrence could happen, it'd be better to treat early on!

micgrace

dearfoam said:

I'd find another doctor
Even if recurrence could happen, it'd be better to treat early on!

Melanoma is a most insidous
Melanoma is a most insidous beast. There is even a colourless version so never underestimate them. A good quality scan of the liver is indicated if the lymph nodes were removed.

Mine was only a pencil sized, non symmetrical stage one with no other unusual signs except under light. No itching, ulcer, bleeding and colour was uniform but was designated as a melanoma. Remember over 1 mm in thickness it is likely or so will be at stage 2 so there is little comfort with these things.

tkmom

need insight
Dear Freckles
I agree with dearfoam. I would get another opinion. You have to be your own advocate, nobody will care and look out for you the way you will yourself. Once in a while you will get a great doctor who goes the extra mile, the whole "ounce of prevention is worth a pound of cure" one of mine is like that.
My melanoma was very much like yours. Not unusual at all, (a large freckle on my foot that would blister if I was on my feet for a long period of time) the dermatologist didn't think so either, but offered to biopsy it anyway. Thankfully! My surgeon noticed a mole that he removed during surgery and it too was melanoma. Every doctor I saw said how unusual it was to have it in 2 locations, I was so uneasy. I pushed for a PET scan. They weren't going to do one, my lymph nodes were clear, blah, blah, I thought whats to say it's not inside where we can't see it? The PET showed enlarged lymph nodes in my axillary area that we have to watch and a lump in my breast. These things would have gone undetected had I not had a PET scan. It will be 2 years in October and I plan to push for another one. I'm not sure what the big deal is... early detection is the KEY. An acquaintance of mine didn't have a Pet at diagnosis and 1 year later her doctor did one and she now has it in her liver and lungs and brain. She is only 22 and fighting for her life. Who knows... if she would have had one when she was diagnosed maybe she wouldn't be in the shoes she is right now. That's a whole year for it to grow and spread.
I did a ton of research and the more I learned the more scared, apprehensive, confused I got. Sometimes I thought "ignorance is bliss", but there's power in knowledge! So I keep learning all I can.
My understanding was that all insurances won't cover PET scans unless proven absolutely necessary by the doctor. I think there is probably a way around this.
I wish you all the best and please get another opinion, I went to a melanoma clinic in Ann Arbor MI to educate myself and to ask them for a referral of a doctor who had trained under them in my area. Find doctors and dermatologists that listen to you and that are at least willing to go to bat for you.
Take care.

Zod66

PET or no PET
Things to consider:
Exposure to radiation - should only be a concern if the PET machine is old. The one at the center I go to is relatively new and does a CT scan at the same time. I actually asked about the radiation exposure and at two tests per year, which I did for five years, it was practically nil.
Expense - as someone else stated not all insurance covers these and if they do the doctor might have to do a peer to peer with the insurance company to get approval. They are crazy expensive but you definitely can't see the ones below the skin and a PET is the only way to catch those.

Statistically recurrence is high for melanoma. So, if you can afford it and your doctor will help get the tests approved each year so that insurance will help cover some of the cost I would advise getting them done. This doctor doesn't sound like he'll help with ordering or getting approval for them though.

micgrace

Zod66 said:

PET or no PET
Things to consider:
Exposure to radiation - should only be a concern if the PET machine is old. The one at the center I go to is relatively new and does a CT scan at the same time. I actually asked about the radiation exposure and at two tests per year, which I did for five years, it was practically nil.
Expense - as someone else stated not all insurance covers these and if they do the doctor might have to do a peer to peer with the insurance company to get approval. They are crazy expensive but you definitely can't see the ones below the skin and a PET is the only way to catch those.

Statistically recurrence is high for melanoma. So, if you can afford it and your doctor will help get the tests approved each year so that insurance will help cover some of the cost I would advise getting them done. This doctor doesn't sound like he'll help with ordering or getting approval for them though.

Most people go, and doctors
Most people go, and doctors too, a little mole? So what. Check it out don't ignore it. These things if a melanoma don't have to get to much of a size, like pencil sized, to become very dangerous and invasive. Never ever underestimate that mole.