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Another hurdle

Suekub's picture
Suekub
Posts: 137
Joined: Apr 2013

I am just back from the oncologist after completeing radiation on spine mets and ultrasound of thyroid nodule. I need to have a fine needle biopsy of the thyroid on Monday. Appears possible that it is meta static  disease which I understand is unusual for RCC but also could be a new primary. Also have a small (8mm) growth on my psoas muscle. Need to wait for results to plan future treatment but apparently neither Sutent or Votrient an option? Getting more scared every day. Any advice? 

 

mrs_blkjak's picture
mrs_blkjak
Posts: 103
Joined: Apr 2013

I don't have any advice but wanted to send you some cyber support. I'm not sure why Sutent and Votrient are not options. There are some super knowledgable people here who might be able to speak to that. 

Texas_wedge's picture
Texas_wedge
Posts: 2799
Joined: Nov 2011

Metastasis from RCC is actually very common  (affects a majority of patients with some pathologies) and so you may have a met rather than a new primary, which is probably, relatively, good news.

You're a survivor and will never have another year as terrible as 2011.

Are you precluded from Sutent and Votrient as a result of having been on the SORCE trial?  How did that trial go? We read ever more cheering news about progress in treating RCC, so hang in there.

Galrim's picture
Galrim
Posts: 305
Joined: Apr 2013

...that RCC mets to the thyroid is rare?

/G

Suekub's picture
Suekub
Posts: 137
Joined: Apr 2013

Thanks for responding. As I attend my oncology appointments alone I think I miss a lot of what I am told but believe participation in the SORCE trial may be the reason that treatments mentioned are not available to me but will gather more info on follow when May 20. 

I believe I was on the drug for 12 months. 1st indication of any metastatic disease was shown in CT done in March, 6 months after drug ceased. 

Feeling a little down at the moment, Mothers Day on Sunday, 2nd Anniversary of my husband's death on Tues.

 

Texas_wedge's picture
Texas_wedge
Posts: 2799
Joined: Nov 2011

G is doubtless right in assuming that he was referring to met to thyroid in particular. 

However, mets to the thyroid are more frequent from a kidney tumor than from other cancers, even though still fairly rare:

http://www.ncbi.nlm.nih.gov/pubmed/17274749

You'll be getting more information soon and it may be fairly complex so it would be a good idea to try to note down the key points that are explained to you on the 20th.

Meanwhile, you're among friends here so do lean on us all you need, particularly over the next few weeks.

PS  Since writing the above, I investigated a useful thread on Smart Patients:

https://www.smartpatients.com/forums/1-conversations/topics/428-rcc-mets-to-thyroid

If this link takes you straight there, then fine.  If not, then I recommend that you join Smart Patients to get to this conversation - it involves postings by a number of people who've been in your situation and it makes very encouraging reading.

The topic is entitled

"RCC mets to thyroid"

 

Suekub's picture
Suekub
Posts: 137
Joined: Apr 2013

Thanks for your help. I checked out this convo. Had the biopsy today, surprised by how painless it was considering no local anaesthetic. Now the long 7 day wait for results. 

 

 

Suekub's picture
Suekub
Posts: 137
Joined: Apr 2013

I saw oncologist yesterday for results of thyroid biopsy - appears to be inconclusive, follicular neoplasm. Anyway have a referral to thyroid surgeon and will need to undergo hemi-thyroidectomy. Of course, further pathology will be done at time of surgery. 

 

rainsandpours's picture
rainsandpours
Posts: 136
Joined: Apr 2013

Hi Sue.  I wanted to share my experience with you.  I'm in a reverse situation, but it involves kidney and thyroid also.

 

Last July, I was diagnosed with Follicular variant, Pap Thyroid cancer with lymph node involvement.  I underwent a hemi-thyroidectomy, then a completion in Sept.  After that, the waters got quite muddied.  The pathologists argued over my diagnoses, and ultimately decided it wasn't an invasive enough cancer to use adjuvant therapy (Radioactive Iodine).  I've been in a holding pattern since, not counting the endless scans, poking and prodding).  Well, in March, I had a neck, chest and pelvic CT.  Results of that showed a hypervascular mass in my left kidney.

 

Cut to April 21st-had a renal CT that proclaimed it 80% chance of being RCC.  This while I'm in the process of testing for 2 surgeries I've just had (gallbladder/hernia repair on May 7, then a Central Neck dissection for node and mediastinum mets from the Thyca on May 17th).

 

What's interesting is although they think I have a new primary cancer in the kidney, my Uro has ordered a Ct guided biopsy on the mass for next Monday the 27th.  His thinking was even if only a 5% chance it's a thyroid met, it's a better option that going straight to surgery.  I have a complex Hilum (still not entirely certain what that means) with 2 renal arteries and a retroaortic renal vein.  The Uro said my partial Lap neph would be 7-8 hours long, with a large chance of blood loss.  So I'm hoping it turns out to be a thyroid met and I can postpone/avoid the surgery altogether.  At that point, I have other choices.  If it's RCC, there's still no rush to surgery.  I can wait likely a year or more.  Which I'm prone to do as I'm only 3 days out from my 3rd major neck operation, and 13 days from major abdominal surgery.  I need time to heal and process all this.

 

Anyway, the point I was trying to make is that even if it's thyroid cancer (which follicular neoplasm's indicate) you have time.  Thyca is a slow growing cancer, and one of the easiest to treat (except in my case where they refused to treat me... and I now have mets).  The partial thyroidectomy is no cake walk (very painful the first few days) but it's in a small area, with a somewhat small incision.

 

Another thing:  don't go by the FNA of your nodule.  Despite what the doctors tell you, a large portion of benign results are false negatives.  I had 3 benign fna's-yet I had a large cancer with metastatic nodes.  Not to scare you, but so you'll be able to wrap your head around it.  There is a condition known as Cowden's that I'm hoping to be tested for.  It is genetic and can cause simultaneous kidney/thyroid/breast cancer.

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