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Hindsight, what would you of done differently?

3boys_mom
Posts: 47
Joined: Jun 2011

Besides being certain to keep good medical records (thanks Nasher) what do you know now that you wish you had known before being treated?

Thanks!

Sarah--3boys_mom

teamwink
Posts: 97
Joined: May 2011

I would have asked more questions and made sure I was 100% comfortable with docs. I deferred to mine as the 'expert', and it was only when I began on these boards that I realized she was very far from that (thanks to all who replied to my posts!). While I'm still in limbo - no thyrogen so no RAI at this point, and I'm having second thoughts - I am on my way to finding a new doc that does not snap at me when I ask questions.

3boys_mom
Posts: 47
Joined: Jun 2011

Teamwink--how right you are. My father's death, was in part caused by poor care. I would not have my sons had I just taken the doctors at their word. I often advocate others to approach there doctors with any concerns they have and thus have come up with this phrase: "Never be afraid to question the doctor; ALWAYS be afraid of the doctor that won't answer your questions!"

I wish you luck in finding a good doctor.

Sarah

palmyrafan's picture
palmyrafan
Posts: 398
Joined: Mar 2011

I would have been more aggressive about not having radiation therapy. I was backed into a corner by my radonc who meant well, but I did not like his approach of "it's now or never" attitude.

Knowing what I know now, I would not have had the radiation therapy.

teamwink
Posts: 97
Joined: May 2011

When you say radiation, do you mean RAI? I want to ensure I understand, as my doc had presented it to me in the same way - like you, I feel very pressured. If you are comfortable explaining, I welcome information :)

palmyrafan's picture
palmyrafan
Posts: 398
Joined: Mar 2011

I had traditional ~ face mask, screw your face to the table ~ radiation therapy. I was told that it was the only way they could ensure the tumors would be stopped in their tracks. What they didn't bother to tell me until after radiation started was the side effects sometimes wait 10, 15, 20 years to show up. The long term side effects: almost destroyed hypothalmus (pituitary, thyroid, etc.), which now requires Prednisone for my adrenal glands, Synthroid for my barely there thyroid and Benicar for my high blood pressure (always have had 120/80 until May of this year when it skyrocketed). I also have to take Pepcid AC twice a day when I take my Prednisone because of the acid reflux it can cause.

Bottom line? Radiation didn't stop the brain tumors from coming back and I have almost maxed out on radiation, meaning that my body can't accept much more because (a) it won't do any good and (b) my body won't be able to withstand the trauma.

But each of us is different and we react differently to medications, surgeries, radiation, etc. This should be an individual decision.

Peace.

Teresa

nasher
Posts: 507
Joined: Apr 2010

I was in such a brain fog a lot of the time.

I would have gone to the cancer support forums earlier and become more active.

I am glad I pushed for RAI (the docs were about 50-50 split)

Ok one BIG thing I would have made sure they tested for BRAF mutation. I have now read through my entire medical record a few times and cannot find out if they tested for it or not... SO I am sure they didn't even though I remember being told I was tested for it.

I also would not have resisted when they told me I should be on some anti-depressants.

Sorry I didn’t have time to respond sooner but I have had 2 doctors appointments so far this week... have another one today at 11 and have an appointment with the VA on Friday. So I have been busy making sure I have up to date copies of all of my records and a spare copy to give to the VA

If I think of anything else I will add it later
Craig

Baldy's picture
Baldy
Posts: 226
Joined: Mar 2011

"I also would not have resisted when they told me I should be on some anti-depressants."

Many years ago I had a similar experience for a seperate and unrelated health issue. I think it's common for depressed people to deny their problem and not seek help.

Alan

catladysue237
Posts: 25
Joined: Mar 2011

I'm not sure I would have had the other half of my thyroid removed. I had so few hurthle cells, it took them 3 weeks to find them in the original tumor. When they removed my other half, the doc cut so far that when they did a trace scan they could see almost no thyroid. Which means of course he got too close to the parathyroid. It's been 2 1/2 months and I'm still taking 7200 mcg of calcium. I have a feeling this is permanent. And the cherry on the top is my doc messed up my FMLA paperwork, so since I work for the Postal Service, this will probably mean a letter of warning from management. That won't be stressful at all! I've said it before and I'll say it again. Xanax is my friend! LOL

teamwink
Posts: 97
Joined: May 2011

I hope this brings you comfort - I had a total shutdown of my parathyroids after my TT, which resulted in a week's stay in the hospital (my body rejected calcium - talk about fun)... I FINALLY got mine working about 6 months later. I know that sounds like a long time, but I hated trying to balance all the pills I was taking - tons of calcium, vitamin D, synthroid, magnesium....ugh! I seriously had a spreadsheet to remember them all! I hope that yours start working better, as I know how frustrating it can be! Hang in there!

sunnyaz
Posts: 582
Joined: Oct 2010

Too bad we don't have it. I would have insisted on RAI after my TT. Can't say it enough, trust your instincts.
Julie-SunnyAZ

nasher
Posts: 507
Joined: Apr 2010

They always say hindsight is 20/20 trust me it is not especially if you have some um... what’s that called...um brain fog or lapses in um... memory.

as teamwink stated parathyroid’s can shut down after surgery

it only took about 2 weeks for the remaining 2 parathyroid’s to get back and working fully

Defiantly spreadsheet and pill box...

I have mine in one of those 4 split boxes for my times in the day... except for the synthroid that is completely separate (or I would need a 5 box/day container)

speaking of such got my synthroid this morning but 1 hour later I forgot to take the pre work ones... guess I will take them when I get off work with the after work ones... then I have the pre bed ones .. And um... yea brain fog. Forgot to bring my lunch ones with me to work. Good thing I have a medical appointment between lunch and off work time and i can swing home and take the after 1 hour ones then take the lunch ones when i get off then take the after work later then the bed ones when i go to bed...

I am still on calcium and Vitamin D and Cytomel and synthroid... and the labs came back my magnesium is low again so...

At least I have come with terms with some ... a few. Of my problems and I don’t have Issues I have full blown Subscriptions.

I think I would also have gotten a much better scanner to scan a copy of my records. they are now 18 in tall + 3 cd's and I have 3 copies of them.

copy 1 for me
copy 2 incase i loose damage copy 1
copy 3 or my if requested to bring a copy of your record to appointment copy.

I get to use copy 3 on Thursday. I did have a 4th copy but that was given to the VA for my disability claim.

Oh also if you ever need to get a copy for a lawyer have them get it themselves. do you have any idea how much time it takes to copy 18 inches of medical records. Sorry ranting again.

I now have a consult set up so i can talk to a doctor to find out if there is enough left of the tissue to do the test for the BRAF mutation.

I am glad I got the radiation even though it caused some side effects.

oh got another one

When requesting a copy of anything or dealing with secretaries... Smile and ask politely and be prepared to wait. On friday I went to get a copy of the last few things i needed for the VA and there was a long line (10+ people) they were all of the IT MY TIME AND YOU ARE WASTEING IT attitude. I came up and smiled and asked politely for what I needed filled out the request form and sat quietly while the others fussed and fumed like a two year old. I left with what I needed 15 min later. 5 hours later I had to wander by to drop something off and at least 4 of the people were still there being annoyed at how long things were taking.

Craig

Chris81409
Posts: 1
Joined: Aug 2010

I wish I had known before my TT that I have MTC, to avoid having two separate surgeries. I found a lump in my neck and went to an ENT. After an indeterminate FNA but before my TT the ENT kept saying “Don’t worry, 96% of nodules are benign”, and “If it is malignant, you’ll get the RAI “Silver bullet” and that’s it, you’ll be done”. With the pathology after the TT came the bad news that I have MTC and the RAI option was not an option. Then my ENT said he had not seen a patient with MTC “in 8 or 9 years”. I went to Fox Chase and found Dr John "Drew" Ridge and I’m glad I did, I just wish that I had found him first.

Seek advice from a specialist but find an expert to perform your operation.

deb deb
Posts: 8
Joined: May 2011

Read each and everyones postings on here! You guys seem to all have your sh** together... Im lost big time! And since Craig said that theres never a dumb question, here goes... after a TT with a diag of papillary cancer on one side, and papillary carcinoma, follicular variant on the other.. how do know if u need RAI?? I take it goes by age and size? and one more question... what does this mean " There is Hurthle cell metaplasia in the epithelium??? thanks deb

sunnyaz
Posts: 582
Joined: Oct 2010

Put simply, yes. If you had Thyroid cancer of any kind, you must kill all remaining cells to try to avoid metastasis. They can float to any part of the body. They like to go to the lymphs, lungs and brain. RAI the only way to kill the remaining cells. Doesn't have anything to do with stage or age. Sounds like you have three types of variants. This is nothing to mess around with. Be aggressive and don't take no for an answer. You need to be on the Low Iodine Diet for two weeks, go off your meds or get the thyrogen shots before treatment and make sure they give you enough RAI the first time around. I don't mean to scare you but from my experience some doctors are just a bit too lax when it comes to aggressive cancer therapies. Get tested for the B-RAF mutation gene as well. I can't say this enough to everyone on this site. It is so important to know what you are dealing with.
Blessings,
Julie-SunnyAZ

nasher
Posts: 507
Joined: Apr 2010

"Hurthle cell metaplasia in the epithelium"

OH I HATE DOCTOR LANGUAGE.... why cant they use english
there is a change in the surface cells to hurthle cell.

"papillary cancer on one side, and papillary carcinoma, follicular variant on the other"

you had papillary cancer on both sides of the thyroid and a follicular variant on one side.

"Read each and everyones postings on here! You guys seem to all have your sh** together"

December 2009 I had to ask my doctor what a thyroid was.
March 2010 finally told it was cancer and not just a minor thyroid issue.
April 2010 I found this site.
May 2010 I went through RAI treatment.

it has been a year and a half of research probably over 2 hours a day plus helping others find answers just so I can understand what happened.

yes the doctors have some major formula of risk vs age,race,sex,type of cancer,staging of cancer, ... ... ... that they come up with to determine if RAI is right for you.

there are large debates over risk of Radiation treatment. Personally I would say it is needed. Julie-SunnyAZ definitely says its needed. but neither of us are doctors.

being that you have issues with medical coverage and due to the shortage of thyroigen shots. when you go through any thyroid scan (and they NEED to do one if they haven't done an after surgery scan). you are going to have to go off your thyroid replacement. That SUCKS I did it... IT REALLY SUCKS.

they are not going to want to test for B-Raf mutation cause it is costly. in another post i think i found a place that dose it for less than $900.

and yes please keep asking questions. some of my doctors hate me cause off all the questions I ask... others are relieved they don't need to translate most there jargon to something similar to English.

Julie is right the doctors are lax with treatment and such.

my surgeon who was wonderful. was more concerned that my scar "looked even and presentable" than worried about the cancer sure it was her job to take the thyroid out and then send me off to the next doctor for the cancer stuff. Honestly she spent over 30 min of surgery time evening out the scar.

During both surgeries she took out a parathyroid. Again the first question i asked is whats that.

if Julie had not mentioned B-RAF mutation I probably wouldn't have found about it and I am still working on getting the frozen sample tested.

trust me it just looks like we have our sh** together.

oh and keep a journal or log or whatever so when its your time you can hopefully help us when the next person shows up after being told "don't worry its a GOOD cancer".

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