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thyroid scan Friday "questionable" MRI next week

poppit
Posts: 11
Joined: Oct 2009

Can someone tell me what this is about? I know everyone is different, but my mind is reeling about what it could be. I am two years (almost) post-op TT. Papillary with a follicular varient...3cm, stage III; RAI 131 Nov 2009, clear scan 2010, questionable scan 2011 (on Friday evening I get this news).

I simply keep thinking that the cancer has found a foothold and they have to to reassess. Is it possible?

nasher
Posts: 507
Joined: Apr 2010

the big question is how is it questionable

yes it is possible that it has found a foothold.

I noticed you said papillary... do you know if they tested for B-raf Mutation when it came up first time?

take it 1 day at a time... figure out what questions you need to ask and ask them.

good luck and keep us up to date

poppit
Posts: 11
Joined: Oct 2009

I can give you a little more information since I have spoken to the nurse at the dr.'s office. it is in my neck nether regions...and no one said anything aobut B-RAF, so I do not know. MRI for neck region for this afternoon. and yes, one moment at a time... thanks :)

sunnyaz
Posts: 582
Joined: Oct 2010

It's me again. I really appreciate your post from my other post and wanted to reiterate that Thyroid cancer is always in the background of our lives. It can rear it's ugly head many years down the road. I have the B-RAF mutation. You may not be familiar with this somewhat new discovery if you are new to this site.

Like I said in my other post, I had recurrence in the lymph nodes only six months after my TT (November 2009). I was only stage 1 with a very small node that I discovered myself after noticing symptoms, putting two and two together and insisting on and ultrasound and FNA. I am in the medical field, so I knew what to look for. I have been through three surgeries and two RAI treatments in total. The last RAI was in February at 178 mCi's. Very close to the maximum dose. I am keeping the cancer at bay right now but I am always on the look out and always will be.

I never bought into the "lottery" of all cancer's myth. Thyroid cancer has a high risk of recurrence especially if you are B-RAF positive. This test is done on the tissue that is removed from your surgery. The mutation makes thyroid, and some other cancers, more aggressive and harder to treat. Not a lot of doctor's are aware of this mutation yet, but word is getting out about it. There are some drug trials being done right now that will hopefully keep the mutation suppressed so that the cancer is less likely to come back. I hope to be one of the first to get it when it is approved.

I don't mean to be a downer but you should be informed. I hope this new finding is nothing for you. Stay strong, you will be in my prayers.

Blessings,
Julie-SunnyAZ

poppit
Posts: 11
Joined: Oct 2009

I have never heard of B-RAF mutation.

I wish, hind sight, that I would have asked the dr about what he saw on the scan this last Friday. I was side swiped, so-to-speak, since I never, ever imagined that there would be anything but a clear report...I joined here right away in 2009, but never kept at it...don't remember why. I guess life got in the way and, well, here I am.

Yes, apparently, cancer is always lurking. and this "good cancer" sucks!! Sorry. I am just a little surprised at having to 'deal with it' again, especially since everyone treats it like it is a walk in the park and something that is soooo treatable.

I was awakened in the wee hours, 3 or 4 a.m., this morning with aggressive thoughts, and you know when you are hypo nothing in your body is aggressive : ) A week ago my TSH was 65.63 so I am really dragging at this point, but I want to know what the scan showed to start. I will keep in mind the B-RAF. Thank you for your assistance. I have been at this since 2009, like you, and I still feel like a newcomer...

nasher
Posts: 507
Joined: Apr 2010

Talk to the lab of the hospital that took your thyroid out

they should still have a frozen section in storage (I was told 3-5 years normaly)

that frozen section can be tested for B-Raf mutation

...
For alot of people it is true Thyroid cancer has a high survibility rate so they think its good.

all of us Survivors realize that its not like other cancers cause just cause your in remission dosn't mean your on easy street. You still have to take your meds and keep up on blook work plus every time they want to do a scan you got the LID to look forward to.

yes Life gets in the way alot... corse for some of us medical appointments get in the way.

this week I only have 4 medical appointments so far scheduled and next week is 5... so its hard some days to get the energy to check this site and keep on going with posts.

need a vacation...
Posts: 4
Joined: Aug 2011

This is the first time I'm hearing about the B-raf mutation. What is it?
I had TT surgery in april and I have the path report on the thyroid there is no mention about the B-RAF mutation. Do I have to call my surgeon or the hospital lab to see about this? I would appeciate any response to this. i'm going to have another round of RAI August 16th. Not looking forward to this. Not on the meds and on the LID now. I think every endo dr. should go on this and see how they like it!!! Not just one time but many to see how easy it is!!
Well thanks for all the help in the info. of what we can look forward to.
Keep well

sunnyaz
Posts: 582
Joined: Oct 2010

Here is a link to the best explanation I have found so far of the B-RAF. It's a bit difficult to understand even for those of us in the medical field. You can do some internet research but I think this is the most simple explanation I have found.

http://en.wikipedia.org/wiki/BRAF_%28gene%29

If they still have your tissue from April they can test it. I donated my tissue from my surgeries to the University of Arizona Cancer Research center. Hopefully it will help them with their research.

Blessings,
Julie-SunnyAZ

veronica57
Posts: 98
Joined: May 2010

I've been sick several times in the last several months and I haven't been posting a lot. I keep getting infections in my blood stream and having to stay in the hospital. The B-RAF mutation is a question I need to ask of my surgeon. Even though, I still have the mestastasis in my lungs, and suspicion that there original nodules still in neck, I'm wondering if new thyroid nodules can grow in the midst? Also, I was wondering if an MRI would pick up cancer? I was just this the other day because I'm getting so many contradictions from Onco, that I was going to ask someone else to refer me for an MRI.

I am glad your cancer is still at bay and you are doing well. Wishing you the best.

Veronica

sunnyaz
Posts: 582
Joined: Oct 2010

It's so good to hear from you. I am sorry you have been sick and in the hospital though. This makes me really sad.

I think that a PET scan would be better at picking up cancer. The cancer can grow back just about anywhere but instead of a "thyroid nodule" it comes back in the lymph's etc. As you know it can also recur in the lungs. If your tissue was saved from your last surgery you can ask for the B-RAF test to be done. It isn't covered under insurance yet, however I think it's a good thing to know. With your recurrence's and the odds being forty-three percent of people having it, you might need to get it tested and get more aggressive with treatments if you are positive for the gene. Are your doctor's being aggressive enough? If not, is it time to change doctors or get a second opinion?

So far I have been clear of cancer since February (last RAI) and March (three lymph nodes came back negative at biopsy). I have another appointment next month to follow up. I dread my follow up appointments because they usually find something, although six months is probably too long for someone like me. Hoping this time it will be different. Seems that this feeling of having something caught in my throat is getting worse, kind of like I swallowed too much food and can't get it all the way down. Certain times of the day it seems worse than other times.

Don't forget about us. Keep us posted on your progress. I will keep you in my prayers.

Blessings,
Julie-SunnyAZ

veronica57
Posts: 98
Joined: May 2010

It is so good to hear from you too. Don't be sad. God is still on my side and he has brought me through it every time. I do have to remind myself of this sometimes. But I know God is working for my good.

I'm glad you mentioned the PET scan. I'm not sure what that is. Would you please explain? I am going to see a new doctor in September. My onco that I have now is a real jerk. He has told me several times to find me another oncologist. He tells me this out of the clear blue sky for no reason. He is contradictory, telling me at one moment that the cancer in my neck is gone and then at another time, he tells me that the cancer is still in my neck as well as that in my lungs. I've taken a break from chemo until I see the new doctor. So far, I'm eating pretty good and food taste better.

I am so glad you're getting negative results. I'm hoping your test will go well next month. Think positive:) That feeling in your throat could be esophageal. You need to have that checked out soon. Ever since I had my thyroidectomy, I have to be careful swallowing or food will get stuck in my throat and I get strangled from liquids. The surgeon said, my esphogus was narrowed.

I will be praying for you. Stay strong.

Veronica

sunnyaz
Posts: 582
Joined: Oct 2010

Yep, it's time for a new Oncologist. Time to get proactive. Go to this link to read about a PET Scan.

http://www.righthealth.com/topic/What_Is_A_Pet_Scan?p=l&as=goog&ac=519&kgl=19829641

I think this is probably what your new doctor will order for you. This is the best diagnostic tool available for seeing the cancer and where it has spread. You are a good candidate for it so your insurance should cover it with or without a prior auth.

I am hoping for more negative tests, but the truth is that I am not too optimistic. The nodes that tested negative a couple of months ago are growing. The real clincher is that now my husband has a node on his thyroid. His family has a history of benign nodes however. I am not too worried about him because he doesn't have symptoms.

Thanks for your prayers and positive attitude. Still praying for you too.

Blessings,
Julie-Sunny AZ

veronica57
Posts: 98
Joined: May 2010

I will go the righthealth website. However, I did read about the PET scab on another website also. I agree, it sounds like what I need. It's amazing, my doctor never ordered that for me. If my new doctor doesn't mention it, I will ask for it.

I'm wishing the best outcome for you and your husband. Stay in touch. God bless.

Veronica

alapah's picture
alapah
Posts: 256
Joined: Oct 2009

I think a PET is best for what you're asking, with the exception of trying to pick up stuff in the brain maybe. I believe a PET is not useful in looking at the brain because it picks up super active cells and much of the brain is super active (ha! at least it is supposed to be!). I have only had one MRI, before external beam radiation. But I have had about three PET scans.

I was glad to hear from you on this board. Been wondering about you. I had a surgical lung biopsy done June 29 and also had a consult with Dr. Marcia Brose, a thyroid oncology researcher at the Hosp of the Univ of Pennsylvania. I am now waiting for results on the B-RAF tests on the nodule tissue they took from my lung. It was confirmed to be papillary thyroid cancer in the lungs (which we figured but as I had a melanoma in situ removed in 2009, we wanted to be sure). Dr. Brose is doing clinical trials in drugs that inhibit growth messages from the outer layer of cells to reaching the inner layers in B-RAF mutation affected cells. If I am B-RAF positive I may be getting in on her trials.

Best to you Veronica! think of you often.
eileen

veronica57
Posts: 98
Joined: May 2010

It is good to hear from you. I'm glad your lung biopsy went well. It is so strange how you and I keep going through the exact same thing. The nodules in my lungs still keep growing. They are stable when I'm on chemo. But I had to take a break from it. I will be seeing a new oncologist next month. I'm hoping he will be more agressive than the onco I've been seeing.

I'm glad you're still researching and seeing other specialists. Let me know if your treatments go well. God bless you.

Veronica

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