I'd really like to thank everyone who responded to my plea for information on this dz.

I recently underwent a pet scan as most of you are aware, and the news wasn't the greatest. I havent confirmed it with my new surgeon yet, and It hasn't been confirmed by biopsy, so I still hold out hope that its not right, but it came out suggesting malignant melanoma, with matastasis, Im sure I misspelled that sorry. I guess I will be jumping to the melanoma threads to see what I can find out.

I really appreciate all your time and information, it really helped to have somewhere to come and get support.

Thank you all again.
Trish
angeleyes

I am so sorry to hear your news and hope the biopsy proves otherwise. However, if it is melanoma, I wish you the best in your treatment.

Love and prayers,

Hmmm...did you have any types of rashes, moles or bumps on you skin anywhere that melanoma would cause...If I am not mistaken doesn't melanoma start in the skin and then work it's way inside to the organs??

apparently I am supposed to have a nodular version. It started like a simple cyst, I was told it was nothing to worry about and all the doctors were caught up in the thyroid goiter and nodules there and determined that I was experiencing viral infections that they didn't pursue the cyst. Last week just after I had an excisional biopsy of my lower arm for another lump that just showed up, the lump in my back, literally blew up like a balloon, it went from pea size to ruffly 4.5 cm around and about 1.4 cm deep into my subq fat. I showed an interal med doctor Im associated with and he thought it was an infected cyst and put me on 875 mg of levaquin for 10 days, during this time the doctors were still trying to locate a primary, my abdomen and interanal organs all came back clean. I have regional metastsis so far, auxillary area and neck. Anyway, the radiologist picked up on the mass on my shoulder and labeled it my primary tumor. Apparently, it went hot on my pet scan. The radiologist explained that the pet scan picks up on tissue that burn glucose normally and any abnormal tissue that is burning glucose. I guess that is a marker for cancer. based on his report this has probably been in action from just a couple of months to 5 years, I remember this mass coming up a few years ago, and having 3 doctors look at and all say the same thing, just a bakers cyst. Noone ever referred me to a surgeon for further follow up. Last sunday evening the thing actually exploded and hasn't stopped draining since.

Never had rash, no new moles, no skin discolorations anywhere, just various cysts and lymphnode swelling. Unfortunately, I was raised on the water, we were always swimming and boating and conoeing as kids. I am blonde, with very light irish skin, so you can imagine, its not that improbable it happened, Im pretty much in defensive mode right now trying to figure out the best course of action. I kinda get the impression however, that my destiny is already decided regardless of what I try. But we shall see,

again thanks for all the support

Whatever you do, do not give up~

With modern medcine and faith you can be a survivor too...there are so many different treatment methods and options these days that you will make it, sounds like it has not gone all over your body so you should be OK...hopefully they can kill and or remove the cells and get you a course of treatment to get you back to normal...wish you the best of luck....keep you hopes and faith...you will make it

thank you for your support, the surgeon had good news, the "tumor" on my back really is an infected cyst and my lymphs are because of the drainage from the infection, I undergo a biopsy today for my neck mass, as they are unrelated. I will have diffinative answers next week finally, this has been dragging on for a year now. My biopsies from other masses are comming back benign.

angeleyes

I am so glad that the biopsies are coming back with good results! It shows that biopsy is the only way to be sure. Pet scans can light up for other reasons apart from cancer. Looking forward to more good results from you!

Love and prayers,

That is wonderful news...we are all very happy for you...hopefully your neck biopsy will come back benign as well...as always in my prayers and thoughts!

Hi everyone,

My biopsy is back and the conclusion is papilary thyroid ca, good news considering last weeks news. will be having surgery soon and chemo, but will be fine.

Thank you all so much for the support and info.

trish

Trish,
you got the results back quick. which I'm so sorry to hear it is a malignancy but am happy that they can get a move on now and start treatment with the chemo asap.
how long have you had the lump on your neck? where exactly was the lump situated on? the middle of the neck where the thyroid is? or near it?
were you having any symptoms?
I'm wondering that if you had this lump on your neck for some time, why didn't a dr recommend an MRI with contrast or recommend a biopsy performed?
it doesnt' make sense that they'd just look at it visually and assume it was nothing when really it wound up really being something?

I really wish you the best and pray it gets irradicated.

keep up your good spirit,

Linda

Linda,


Hey there, here is the short hand version of my progression to this diagnosis.
Hope I didn't make it way to confusing. So much happened in the last year its hard to keep straight sometimes.

it has been almost a year. I was feeling dizzy at work and almost fainted. That started it all. I had and ekg which came back A-fib, then rushed to ER they said ok now see pcp, went straight to pcp office, said no afib, sinus arrythmia. put me on meds, meanwhile my interfering boss hooked me up on a halter monitor for an overnight, and my heart rate while sleeping would be in the 180's.

He did a manual exam of my thyroid thinking it was involved with the arrythmia, and he diagnoised a goiter and ordered blood work, 24 urine, and an u/s.

The ultra sounds showed the nodules in both sides of thyroid and one outside of the thyroid which is located between my caratoid, jugular, and the major muscle of my neck also the parathyroid glands. He then ordered an mri with and without contrast, was inconclusive, ordered a radioactive iodine reuptake study, came back inconclusive, retest in 6 months.

Six months later, new mri shows new masses below the clavical possible malignant with matastisis. PCP wants me referred to surgeon for biopsy, surgeon wants another u/s. The radiologist was suggesting lymphoma.

Meanwhile, I had a mammogram come back with suspicious findings, and have had an abnormal pap, found something on transvag u/s and have a mass in my uterus to deal with. Breast is okay, have to have biopsy on uterus and cervix.

back to neck, u/s suggested ct with and without, came back most likely malignant again matastasis, surgeon wants ct guided fine needle done, cant find a provider in our area who does them and wastes 4 months not doing anything, wrote me off with cat scratch fever. I refused to beleive it and asked for a referral to another surgeon who immediately asked for a new ct with and without, had results in 3 days, went for pet scan one week later, another ct, and 3 days later had my biopsy confirmed thyroid ca. My general surgeon now says he has never seen a thyroid ca develop outside the thyroid and the thyroid remain essentially normal to all appearances, the nodules have disappeared entirely, and the tsh levels were actually beginning to drop to normal as well. He said that I had so much going on it was difficult to determine just what was causing what, then add in my mom having the same things going on only she is terminal was really adding confusion to my picture.

Its been a very long year, oh and yeah two weeks ago told I had melonomia only turned out to be an infected cyst thank god.

Also during this time I had 7 other lypomas crop up came back benign.

Now I am waiting on a special surgeon that can remove the mass next to my carotoid without killing me or having to remove the muscle or jugular veins.
They are also taking out my thyroid, all of it. Once my tsh levels reach 40 then I will have to undergo the I-131 radioactive iodine chemo, they are thinking completely done with everything in time for thanksgiving.

The answer to your last question is yes this mass is responsible for the arrythmia. It is putting pressure on the carotoid artery and the jugular so my heart races in response. I should be able to get off my heart meds once the surgery is over, he says I will start to drop weight as well, I have gained almost 60 pounds this last year.

I have probably left out several things along the way, so much was done, and yet no answers received it was sureal.

My surgeon isn't sure what to think of me, I thanked him whole hardedly for finally figuring this out and giving me a direction to go. I am not the type of person who waits patiently at all. I can deal with anything as long as I have a direction. I really cant just wait and watch. He said hes never had anyone thank him and hug him for telling them they had ca. My big thing was after being told 3-9 months with melonomia, this was piece of cake for me. It wont be easy but its survivable, I will get to see my kids graduate.....god willing nothing else goes wrong.