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Sunrise19 update

Sunrise19
Posts: 20
Joined: Apr 2019

Realize that I have taken way too long for an update, but seems things go up, down, sideways  and always appts down the road. And that's the way this is gonna be. Then I read all the recent updates and questions and realize that there are so many more complicated issues ... and this will hopefully be simple.

Dear Bluebird1 and All Great Ladies: After not being able to complete the advised 6 carbo/taxol, the Treatment Team stopped me at 4. Yes, they had given Neulesta but counts did rise enough to continue, also had tinnitutus, some hearing loss and some neuropathy. They had also given me a delay several weeks but no improvement. Then, after another month, a tiny but important improvement that showed that my bone marrow would start improving. 

Got my after treatment check up late June. CT Scan clear except for nodules on thyroid, which could be checked later in the summer. I was high with relief but my adult son encouraged me to have the thyroid ultrasound before heading back 8 ish hours away. I got that appointment and was then advised a couple of nodules "highly suspicious". Well, my Treatment doctor said it would be rare that this is the same histology and you have a referral to Endocrinology. So, in July I went in for a simple fine needle aspiration biopsy. Well, 12 fine needles later(ouch, but doable) I had to wait for the results. Yes, 70% chance of papillary thyroid C and other nodules probably benign. Partial removal of thyroid recommended and full if needed during surgery. They will also check for the rare chance that this is somehow related to the Uterine Serous G3 diagnosis (there are lymph glands and cells behind the thyroid area).  I could wait a month, and decided to wait and have requested a second opinion to see if I could do wait and watch. Doubt I'll get that.

My feelings went from high to low over the next hours and days. So, I did tell both departments having NED for 24 hours and then this diagnosis made it worse. Why not send me for the ultasound, and biopsy right after the CT Scan results? Then give me the whole picture. The answer was somewhat blurred ...two different depts, probably not the same cancer and we understand why you feel disappointed. Well, the reality, as you gals know is that you go in for checkups hoping for the best but knowing that anything is possible. 

So, after a few days, I thought, "lucky they found this" and I'm lucky that the neuropathy subsided and my energy returned and I do feel good. Next will be 2nd opinion and probably schedule surgery, then have next Uterine checkup in October. 

Thankful for this Forum!

 

 

barnyardgal
Posts: 218
Joined: Oct 2017

I'm sorry about your thyroid. I am hyperthyroid and have a nodule on my thyroid. Mine is benign but since it caused hyperthyroidism they usually treat with radioactive iodine or surgery. I looked at doing the surgery but since the hyperthyroidism is going into remission it looks like I won't have to treat. But the surgery doesn't seem too bad. I hope all goes well! Glad you're starting to feel better.

Sunrise19
Posts: 20
Joined: Apr 2019

Thank you Barnyardgal. Yes, I'm hoping I'm in that 30% chance of benign, but unless they take it out there's no way to know for sure, so after 2nd opinion, may need to bite the bullet again.

BluebirdOne's picture
BluebirdOne
Posts: 198
Joined: Jul 2018

Thank you for the update. It doesn't seem right that they did not immediately get you the ultrasound, which is a relatively simple procedure quickly done. It shows that we have to be proactive and question things that affect our getting care. A second opinion is always a good idea! Please let us know how everything goes. At least you are NED with the uterine. 

Denise 

Sunrise19
Posts: 20
Joined: Apr 2019

Yes, Denise, I was surprised at the order of things. Yes, I checked to see if the NED is still there, and it is, and it would be rare to be related, but you know that rare is always a possibility. Hoping for the best. Thanks.

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2591
Joined: Mar 2013

Sunrise, thank you for stopping in and letting us know what is going on.  You have a lot going on and I think we all want to know what the plan will be going forward.  You are in my prayers.

Sunrise19
Posts: 20
Joined: Apr 2019

Yes, I plan to be on here more, even if NED sticks around, because like BluebirdOne said in another post, there is not enough education. And not enough research, trials etc  etc. Recently read an article on the cancers that are cured more and those not. All correlated with #of groups battling for research and raising dollars and large groups getting the word out! I do hope your next trial and /or plan works! And that you get to Bway often for more escape time ; )

Forherself's picture
Forherself
Posts: 219
Joined: Jan 2019

Papillary thyroid cancer has a good prognosis.  It may just be a second cancer.  I am just thinking now anything is possible with cancer.  I don't think people realize specilists really don't know much about other areas of medicine.    They should have referred you for investigation of your thyroid nodules.  Hope all goes well for you and you hear good news again.

Sunrise19
Posts: 20
Joined: Apr 2019

Yes, agree, but like uterine, there are some rarer types so surgery will confirm, and that's a reason to have it done. And yes, I'm keeping my primary internal doctor in the loop too cause specialists are so foccused on their field. 

Thank you!

DebiR
Posts: 37
Joined: Jul 2014

I had my thyroid removed at age 32 in 1989 and it was papillary thyroid cancer.  I had a lump that was visible on my throat.  It was before doctor Google so I had no idea.  At the time my doctor told me that if there was such a thing as a benign cancer this would be it.  Very easily treated with radioactive iodine which I had after surgury.  I had to drink the iodine and stay in a hospital for 3 days but my understanding is today you just take a pill.  Much, much easier than what I went through for my stage 3A UPSC.

Maybe you are just lucky it was caught very early on the CT scan for something else. 

Debi

 

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