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More tests and possibly more cancer

Jen T
Posts: 20
Joined: Jun 2017

I was diagnosed with clear cell papillary renal cell carcinoma that was removed in August. According to my doctor, that kind of renal cancer rarely spreads or recurs. I was really happy to hear that and was really hopeful that I'd never have to deal with this stuff again. I've still got some cysts that they will watch one of which was slightly complex but my doctor thought they were benign. 

I've had Hashimoto's thyroidis and multinodular goiter for about 10 years now. I went for a thyroid ultrasound today and now they've found in addition to my multinodular goiter a 3.2 cm exophytic nodule. The report says it may represent an exophytic thyroid nodule or a parathyroid lesion. I had a scan last year that did not mention this lesion so its likely pretty new (or just missed on the previous). Any body else ever have anything like this following RCC? My doctor must think its bad because he called me within 2 hours of the scan to tell me he's refering me to an endocrinologist. This year has really sucked. I'll probably cross post this in the thyroid cancer group. I'm freaking out. 

 

Jan4you's picture
Jan4you
Posts: 1327
Joined: Oct 2013

My goodness, Jen, no wonder you are concerned, rightly so. I would suggest you contact member, JoJo61 who went through some serious thyroid issues. Turns out hers was not metastatic cancer from RCC...still...

I am sorry for what you are going through too. I also suggest you try SmartPatients.com too in case there are more folks with similar issues. Again, I am here for you, no matter what, all the way!

Sending you healing hugs ~

Jan

stub1969's picture
stub1969
Posts: 920
Joined: Jul 2016

During my baseline scans prior to kidney surgery they also found what they throught was thyroid cancer.  My RCC surgery was on a Friday, I was discharged on Saturday, and back to the hospital for a thyroid biopsy on Monday.  Papillary Thryoid Cancer was confirmed.  I know it sounds weird, but I was relieved that it was this type of cancer rather than RCC.  A month after my kidney surgery they took out my thyroid along with several lymph nodes--two were positive.  Fortunately, I had an excellent surgeon and she through she got it all.  My three month scan was clear, so she my be right. 

Good luck, Jen.  I'll be sending you positive thoughts and prayers.

Stub

Jen T
Posts: 20
Joined: Jun 2017

Thanks for your support. I feel like this is a replay of the renal cancer diagnosis. Get a scan, getva report, concerning results and then wait wait wait to see a specialist to figure it all out. 

stub1969's picture
stub1969
Posts: 920
Joined: Jul 2016

different.  My treatment has been at Mayo in Rochester, MN.  It sure seems that once my cancer was found the doctors put the accelerator down and I just hit cruise control .  No waiting other than for a consultation with the surgeon.  Jen, can I ask where you are being treated?  I'm sure my experience is similar to others that are being treated at a larger, research or university hospital.

Good luck!

Stub

Jen T
Posts: 20
Joined: Jun 2017

I'm being treated for my kidney cancer by my local urologist. He seems to be a very good surgeon but rather nonchalant about the cancer. My cancer was clear cell papillary renal cell carcinoma. With that particular type there are no reported cases of metastasis or recurrence which is good. My doc acts like I'm in the clear. After reading up on renal cancer since my diagnosis, I'm not too sure about that. I would love to be seen at a university research hospital but unfortunately I can't get in at this time. I live 25 minutes from Vanderbilt but their urology clinic would not even let me come for a second opinion before my surgery because they don't accept my insurance. I asked if I could private pay for at least the 2nd opinion and they said no. our insurance plan this year came from the exchange and in our area of Tennessee Vanderbilt is not on any exchange plans offered.

ive been kind of spearheading my own treatment by using my primary care doctor instead of the doctor who treated my cancer. My primary care doctor has been very good about referrals and tests. He's the one who sent me for the thyroid ultrasound and referred me to the Endocrinologist. He's also set a referral for genetic testing since I talked with him about the recommendations s that those diagnosed with renal cancer under age 46 get genetic screening. He set me up with an oncologist for next month.  My urologist on the other hand didn't think any of that was necessary. My urologist wanted to just do an X-ray of my chest and Ct of my abdomen For my follow up in November.  I read that a chest CT would be better (since the first one detected 5mm chest nodule)  so my pulmonologist who I see for asthma agreed and has scheduled a CT. ive reached my deductibles for this year so I'm trying to make sure I get all of these screenings done before December. 

Next year my husbands company will offer health insurance. I plan on trying to switch to a specialist at Vanderbilt where hopefully they'll take a more proactive approach. 

foxhd's picture
foxhd
Posts: 3183
Joined: Oct 2011

from my cancer and radiation. TSH numbers were all over the map. Constantly ice cold and tired. I am now stable at 100mcg thyroxin/day. It was probably a year before I got used to the change. Now I don't notice.

Rockspin
Posts: 77
Joined: Aug 2017

I actually had been diagnosed with hasimotos several years before kidney cancer occurred but as soon as I'm done healing from my surgery for a full nephretomy I plan to have my thyroid scanned again because I'm concerned. I already take synthryoid meds.

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