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Thyroid out, pathology in

Suekub's picture
Suekub
Posts: 123
Joined: Apr 2013

Had thyroidectomy on 4 July - total necessary. Phone call today from surgeon who confirmed RCC. Saw oncologist today as well, doesn't want to start pazopanib until full surgical recovery. Also need a further MRI of L1 vertabrae required by radiation oncologist who is not yet convinced laminectomy necessary - surgeon is ready to operate (Although have not yet seen him). If back surgery is given go ahead this will again delay commencement of drug therapy for another 4-6 after surgery. I am really concerned about continued growth of all other lesions (see previous posts).

Opinions please?

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Sue, you joined us fairly recently and had a huge tumor at a younger than average age but I don't recall the pathology you have.  Could you give us details?  (At the moment, it's difficult to readily run down your previous posts to fill in the gaps.)

It's good to know that your thyroid was an RCC met and not another form of cancer.  I suppose we hope that you won't need back surgery in the immediate future and so starting (on Votrient?) won't have to be delayed as much as if you need further recovery time. 

However, if there needs to be further delay, you can try to take comfort in the knowledge that RCC and its mets are slower growing than most cancers and so you won't lose a great deal of ground if you have to wait a couple of months.   The picture is a little different if you have sarcomatoid change which might tip the balance in deciding whether to postpone further surgery and start systemic therapy sooner.

Suekub's picture
Suekub
Posts: 123
Joined: Apr 2013

Thanks for your response. I can't find a copy off my original pathology but definitely clear cell. to recap last scan 19 June showed new 18mm lymph node in the aorta pulmonary window, nodule in lower lobe of left lung 6mm (from 3mm previously), sub mm nodule in the periphery of the mid zone if L lung. 5mm and 6mm pleural based nodule in R lower lobe posteriously not previously present.  The hypodense lesion in the spleen measures 18mm x 21mm (unchanged) - may be a haemangioma. There is similar appearing lesion in segment VI of R lobe of liver 11mm (previously 9mm). There is also the L1 lytic lesion which apparently has increased in size with soft tissue bulging into spinal canal (I had 10 external beam radiation treatments and 2 steriotactic ). lesion in the retroperitoneum adjacent to left psoas muscle measures 10mm (previously 8mm).

I am just so frustrated! On the good side I don't feel sick, nor do I have any pain. My new full time job is being a "patient" patient. 

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

You have, alas, more reason than most of us to be all too familiar with the lingo here and I imagine you'd remember if you had sarcomatoid clear cell.   There's a lot going on, some of which may be not so bad.  However, it sounds as if systemic treatment is called for and but for the L1 lesion that might as well be started now. 

Have you been given a good idea of the downside in postponing the back surgery?  If the consequences of leaving that could be serious in the short term, then getting that done first would make sense - it would otherwise have to interrupt systemic treatment later - and the risks elsewhere are not so dire that the couple of months necessary would be critical. 

If the L1 lesion is not such an urgent factor, then it might be worth starting the systemic treatment now, in the hope that the drug might take care of the lytic lesion as well as the rest.  Either way, it does seem as though you're going to have to be "patient"!

Suekub's picture
Suekub
Posts: 123
Joined: Apr 2013

had dressing removed. Also a obtained a copy of the pathology which is not good - multiple deposits of metastatic clear cell renal cell carcinoma, margins involved. I know this is what told to me over the phone but I think I chose to ignore it. I am to have further MRI of spine at the end of the month to consider options - surgery or pazopanib. I am just wishing that the next time a see a doctor it will involve  active treatment. It would be nice if the next time I posted on here it is with some good news for a change.

Having the luxury of shedding a few tears and then pull myself together and continue the fight.

Best wishes to everyone.

 

 

MDCinSC's picture
MDCinSC
Posts: 574
Joined: Feb 2013

Whatever I have to offer, it is yours!

This is a place of great joy and deep sadness. They seem to go hand in hand here! 

The beautiful part of it all is that gaity or sadness, we are not alone here.

“Courage: the most important of all the virtues because without courage, you can't practice any other virtue consistently.”
Maya Angelou

Take heart and fight the good fight! Tell me where I can help.

Michael

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

It saddens me to hear what you're going through.  I hope you and your docs are able to formulate a plan soon.  With your recent tragic losses, do you have close family members and/or friends to support you?   Do come here and open up as much as you need to while things are so unsettled, Sue.  You'll keep on fighting and we'll help you all we can.

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

duplicate - the system is working a lot faster now, isn't it?

MDCinSC's picture
MDCinSC
Posts: 574
Joined: Feb 2013

Thank you for your hand in it!

Bellweather
Posts: 47
Joined: Jun 2013

Sue, your courage to fight this battle is contagious and I hope to be as good of a patient patient as you are in my journey. We are all praying for positive news to come, keep moving forward one step at a time.

Bellweather
Posts: 47
Joined: Jun 2013

Sue, your courage to fight this battle is contagious and I hope to be as good of a patient patient as you are in my journey. We are all praying for positive news to come, keep moving forward one step at a time.

foxhd's picture
foxhd
Posts: 1951
Joined: Oct 2011

Sue, I still have more than my share of good fortune and you can have a big share of mine. We do this together. Fox.

GSRon's picture
GSRon
Posts: 1306
Joined: Jan 2013

Sue... sorry to hear your news... but..  the Pazo (Votrient) may be a great choice.   Pazo has a good track record of getting shrinkage.. but the side effects although usually easy to tolerate sometimes the Liver does not like it..  Still, the Pazo is really good for a lot of people..!  So, I hope you try it and most importantly I hope it works for you..!!

Oh please look at the several posts on Votrient for more info..  hint you and the toilet will be on very close speaking terms....

Ron

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