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Doubt?

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

After all I've been through, I'm now hesitating to do anything about my kidney mass.  Before anyone jumps to conclusions, let me explain why:

 

-My ENT, Rad Onc and GP were convinced I had a Thyroid cancer recurrence.  I had an invasive neck dissection last Friday that came back in Pathology as benign.  I had some strange kind of tissue regrowth that spawned nodules in my Thymus, but no malignancy was found.  This was after 6 months of testing, body scans, biopsies, CT's and countless dr appointments.

The original biopsy (pre-surgery) 15 months ago was a benign hyperplastic nodule-yet after removal was full of cancer.  I simply do not trust biopsies, and at this point, Pathologists.  Who's to say they even test all the tissue?  Maybe they only sample a few slices? 

 

To top it off, I'm scheduled for a biopsy on my kidney tumor this Monday.  I don't want to do it!  There's no guarantee the results will be finite, and I will not have surgery again unless it's for sure cancer.  Which puts me at a crossroads.  What if it comes back ectopic thyroid tissue or some weird kidney tumor that they can't decipher?  What then? 

My mass is small <2cm, which leads me to think I can simply wait, with occasional ultrasouds to monitor it.  Has anyone ever had similar thoughts?

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

Suppose its a knot of meal worms mating and crawling around?  Suppose its an alien life form?  Would you not want to know? I'm not trying to belittle at all!  It is after all your life and your choice to deal with.  The chances of keeping it small and manageable are best when it IS small and manageable.

My sister in law has just developed a mass on her spine that is painful, causing presure and pain and night-time tempiorary paralysis of her legs.  She too wants to keep it in the hands of a chiropractor because she is in denial and afraid.  Who can blame her? Not me!

I'm still recovering from my surgery myself, but I purchased a ticket for my wife and she is taking her to a bone scan on Tuesday because she needs to know the score.

Pay your money and take your chances, but your chances improve with early detection and treatment.

Good luck on your decision!

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

I'm not in denial- I know the risks are real and out there.  Just not sure I can deal with the outcome either way. 

 

I'm sorry to hear about your Sis in law.  Hope things turn out well for her.

 

Thanks for your response.

Djinnie's picture
Djinnie
Posts: 945
Joined: Apr 2013

I understand why you would feel the way you do, you have lost your trust. You have been through some painful procedures and you must by exhausted by the continuous examinations. Also to be faced with conflicting information in the final analysis would test your faith in your treatment.

Ultimately, of course you are in control of the situation. It may be worth changing your specialists, and find a treatment you are more comfortable with. I have had treatment on my kidney twice, in different countries. In both cases I was advised that the majority of masses found on the kidney are cancerous, and with that consideration in mind they would just remove the tumour and test it afterwards.

There are less invasive procedures for small tumours.  My first procedure was Radiofrequecy Ablation, the tumour was destroyed by the insertion of a probe. There is also Cryoablation which is a much quicker procedure, it freezes the tumour. There are I believe a couple of people on this site who have had that treatment. In either case the tumour would be gone and one less thing for for you to worry about.

All these procedures are overwhelming, maybe you need to step back and take a breath and consider your options. We can all give you advice based on our experiences, however, you can only make a decision that feels right for you.

All the best to you

 

Djinnie x

 

 

Djinnie's picture
Djinnie
Posts: 945
Joined: Apr 2013

I understand why you would feel the way you do, you have lost your trust. You have been through some painful procedures and you must by exhausted by the continuous examinations. Also to be faced with conflicting information in the final analysis would test your faith in your treatment.

Ultimately, of course you are in control of the situation. It may be worth changing your specialists, and find a treatment you are more comfortable with. I have had treatment on my kidney twice, in different countries. In both cases I was advised that the majority of masses found on the kidney are cancerous, and with that consideration in mind they would just remove the tumour and test it afterwards.

There are less invasive procedures for small tumours.  My first procedure was Radiofrequecy Ablation, the tumour was destroyed by the insertion of a probe. There is also Cryoablation which is a much quicker procedure, it freezes the tumour. There are I believe a couple of people on this site who have had that treatment. In either case the tumour would be gone and one less thing for for you to worry about.

All these procedures are overwhelming, maybe you need to step back and take a breath and consider your options. We can all give you advice based on our experiences, however, you can only make a decision that feels right for you.

All the best to you

 

Djinnie x

 

 

Djinnie's picture
Djinnie
Posts: 945
Joined: Apr 2013

Sorry to post twice, I tried to delete the second one obviously didn't work.

Texas_wedge's picture
Texas_wedge
Posts: 2798
Joined: Nov 2011

Djinnie, as the CSN software stands at present (there are changes going on behind the scenes but they may not bear on this issue) you can't delete the duplicate post.  However, you can't delete the content - just take the edit facility and wipe the message.  Since you can't erase the posting completely, people often just substitute with "dup(licate)"  or something similar.

An alternative is to wipe the existing text and then put in any afterthought you may have, if there's something else you wanted to say or, maybe, clarification or expansion of a point in your first post.

Djinnie's picture
Djinnie
Posts: 945
Joined: Apr 2013

Thank you Texas, I will remember that next time.

 

Djinnie

Galrim
Posts: 308
Joined: Apr 2013

...unless your doctors estimate a high possibility for it either being a cyst or a papilloma I would proceed to have it checked. The main reason being that lesions appearing as solid masses has a 90 percent risk of being malign when in a kidney. Personally I would scrutinize the urologist about their reasoning behind the biopsy. If that reasoning is a "well, we dont really know, could be anything", then I fully understand if you go with the watchful waiting.

Just my five cents. Your call.

/G

Texas_wedge's picture
Texas_wedge
Posts: 2798
Joined: Nov 2011

rainsandpours, the answer to your question is 'Yes' - many people find themselves in situations partially similar to yours and facing the same choice.

In your situation, I would have no hesitation in taking the route of continuing surveillance with no intervention at this time.  However, I would want CT scans, with contrast, if that is still OK for you, not just occasional US scans.

You need time to recoup and to get back to a more normal life.  With biopsies they do sample only small bits of tissue and there is approximately a 25% false negative possibility. You were unlucky enough to have had one of those.  Luckily, they removed the lesion which turned out to be cancerous.

Usually there would be very little risk at all in waiting and watching for the immediate future, at least.  The information Djinnie has given of statements from her doctors, as she has stated it - I was advised that the majority of masses found on the kidney are cancerous - is simply incorrect.  (Of course, it depends on the exact terms used and the context.)  As we get older we almost all acquire cysts on our kidney(s) and these are mostly completely benign and won't change.  (I, myself, have a 6.5 cm cyst on the top of my remaining kidney and no-one is bothered about it in the slightest and I don't believe that's merely because they're sure my current metastases will kill me first - at least I sincerely hope not Smile.)

What they're seeing on your kidney may be completely benign, may just disappear or shrink or remain the same indefinitely.  If, on the other hand, it's actually RCC or becomes so, there is no risk of it spreading at the size it is so delay now is not going to represent any hazard.  Watching and waiting would make perfect sense.  I opened my previous paragraph with the word "Usually" for a reason.  Your position is a cloudier one in that what's on your kidney could be a thyroid met?  In that case, the recommended surveillance for a benign/possible RCC mass might not be appropriate.   Accordingly, I would want fairly close follow-up by CT for the immediate future.  A met to your kidney could behave more aggressively than an RCC primary.  Have your docs gone over with you the likely course of progress if it turns out to be a thyroid met? 

However, the lesion on your kidney is extremely unlikely to be a thyroid met.  Although this paper is a few years old, it probably gives a fair idea of just how unlikely and it also discusses the comparative values of the various scanning methods.  The paper is entitled  "Renal Metastases From Thyroid Cancer Masquerading as Renal Angiomyolipoma on Ultrasonography"   and can be found here:

http://www.jultrasoundmed.org/content/25/11/1459.full

Since it's very unlikely to be a thyroid met, in your shoes I would take a well-earned rest and take watch and wait with CT scan follow-ups.

 

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

You do have a way with words TW!

Rains . . . I apologize if I sounded abrupt and uncaring. I'm not.  In my case, I find I can deal with any news as long as I know what the news is.

I sincerely wish you all the best!

Michael

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

Thank you everyone for your advice and kind words.  I feel better knowing others' understand.

 

Regarding the biopsy:  I'm scared and nervous because it's likely they're doing a Ct guided (was never actually explained to me how, but I have to be at the hospital 2 hrs early for some reason), and I'm dreading the CT.  The Renal protocol I had on April 21st was horrendous.  It took them 7 (yes 7) attempts to get the IV in, and I was black and blue for 3 weeks.  Not to mention the contrast push was the most painful thing I've ever gone through.  I cried the entire time.  Not an experience I want to repeat.  That was my reasoning for doing followups with US.

 

No one has discussed what a thyroid met would mean to me as far as treatment goes.  So I have no idea.  I really really want to avoid surgery at this point though.  If they keep taking stuff out, will they put any back in? :p.  I'm not sure the ablation techniques are available to me there, and the Uro never mentioned them.  I see him on June 14th and will certainly ask about it.  Watch and wait isn't standard either for my age group, so who knows?

 

TW:  thank you for your link.  I appreciate yours and everyone elses's time and effort in replying to me. 

 

Oh, also, there's no chance it's an Angiomyolipoma.  The Ct report states " no macroscopic fat.  Solid lesion with vascular elements"

 

So much to consider, and I'm so overwhelmed by it all.

 

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