Is this something I need to truly worry about?

rainsandpours · April 2013

Hi, I'm new here . I've been reading for a while (here and the Thyroid cancer forum), and have learned so much from ya'll . Anyway, I was hoping I could get some imput from the expert patients here. A little backstory:

July 2012- diagnosed with metastatic FVPTC
Sept 2012-completion Thyroidectomy
Dec 2012-had Whole Body I123 scan-mets found in sternum and left lateral neck. Rad Onc blew off as residual Thy tissue (um nope)
Jan 2013-had Abdomenal US for gallbladder pain- stones found-scheduled for Cholectomy May 7th
Jan 30th-had neck US. Revealed large hypervascular mass in Left Supraclicular fossa.

Things start moving really fast here. All this time since my Thyca diagnosis, the onc's and docs have been poo-pooing it. They refused to treat me with RadioIodine to rid of remaining thyroid tissue/cells. Anyway....

Feb 6- Rad Onc gets results of neck US-schedules me for FNA of neck mass (turns out it's the area that lit up on WBS in Dec)
Feb 18- FNA. Radiologist has difficult time biopsying (due to complicated location). Results come back inconclusive, recommends CT
Mar 6- meet with Gen Surgeon for gallbladder. He's disturbed by my Thyroglobulin level of 350. and neck US results. Schedules me for surgery on gallbladder
Mar 12-CT with contrast (ordered by Rad Onc). GP calls with results (Rad onc never did). Calls me into her clinic for results.
Mar 14- Seems they found 3 masses;

1) 2.7 x 2.4 cm inhomogenous mass in sternal notch (yes we knew this one) with signifigant vascularity

2) 1.6 x 1.4 x 1.1 cm left KIDNEY mass, not clearly cystic

3) 1.6 x 1.7 cm solid left breast nodule.

GP orders renal US

March 22, have US
March 22 (later that day) meet with ENT to discuss surgical option for sternal tumor
Apr 1- GP tells me US reveals "indeterminate for cystic lesion. MRI or renal CT protocol recommended". She also says she's going to refer me to a breast surgeon (I have bi-yearly mammograms/ US due to density and multiple cysts)
Apr 9th- meet with BS, she tries to biopsy largest complex cyst, gets zero fluid . Concerned, she orders MRI (still waiting for that appt)
Apr 9th (later same day). Meet with Rad Onc. She could care less about any of this stuff. Doesn't order testing, tells me to come see her in June. Sigh
April 10th- phone call telling me I have an appt with a Urologist April 18th, and Renal CT April 21st ( that's a Sunday, holy cow).

So here we are. After dealing with Thyca and the slow process of testing/surgery/followup, now that my kidney has a mass, things are moving fast. Scarily so!

Anywho, should I be freaking out about the kidney mass? It's small (so GP says), and I'm hoping it's a thyroid met, but the Rad Onc said it was very unlikely. I'm losing my mind thinking I could be dealing with 3 different cancers at one time. I've got 4 surgeons in the loops, and umpteen tests coming up. I have 2 surgeries in May (GB on May 7th, Central neck dissection May 17th)

To top it off, I leave for a vacation on Mon, Apr 22nd. I won't be back until April 3oth, and have to somehow squeeze in my pre-op testing appt, and a breast MRI, while being back at work for the week pre-surgery.

I'm so burnt out on the whole process, that I'm tempted to just kind of ignore the kidney deal. It's small, it's not for sure it's RCC, and with everything else I have going on, I am not mentally up to this right now .

One question I have is whether I should have a biopsy on the kidney mass? Even if there's a slight chance it's thyroid, I'd like to know. It is a much easier-to-treat cancer ( should the oncologist actually DO something) with a good prognosis. I know the jury is out on kidney biopsy, and it's almost always surgically removed. but I'd like to avoid a FIFTH surgery in less than year .

Thanks for your advice.

Gordon Charles · April 2013

Other than that Mrs. Lincoln, what did you think of the play?

My goodness. After all that I don't have a recommendation, but the fact that you won't let all this stop your vacation seems to me that you have things pretty well under control.

Keep asking questions of your medical team and don't let them pass the buck.

P.S. Don't forget to use sunblock.

Good Luck!!!!

icemantoo · April 2013

Enough already

Rcc is bad enough, but to have 2 other Cancers at the same time that is a little rough. What you need is an oncologist to guide you through this.

Yuor RCC tumor alone is very small and is neary 100% curable by surgery, How to navigate amongst the different Cancers however is above my pay level. Whether you can do a wait and see on the Kiney Cancer is likewise above my pay level.

I wish you luck and as far as I can see the RCC alone is very managable.

Icemantoo

Texas_wedge · April 2013

Gordon Charles said:
Other than that Mrs. Lincoln, what did you think of the play?
My goodness. After all that I don't have a recommendation, but the fact that you won't let all this stop your vacation seems to me that you have things pretty well under control.

Keep asking questions of your medical team and don't let them pass the buck.

P.S. Don't forget to use sunblock.

Good Luck!!!!

Other than that Mrs. Lincoln

Your wit is so priceless - I wish you'd treat us to it more often. (Incidentally, how are you doing, health-wise?)

Texas_wedge · April 2013

What to worry about?

"rainsandpours" - so apt, as is iceman's "enough already"! iceman says it's above his pay grade and I guess that applies to everyone here and probably also to your doctors. It's a pretty bewildering scenario and would take anyone out of his/her territory into areas unknown. It occurred to me that you may need someone courageous and decisive (and knowledgeable, of course) to help you make the best decision and the top urological surgeon Chris Wood at MD Anderson in Texas sprang to mind as that type of person. This led to the question of where you are located and under treatment - ?

With iceman's caveat in mind, I'd like to try to give a little help, if possible. My feeling is that you've got plenty to think about already (your vacation may be well-timed to give a brief respite) and your gut feeling that the kidney lesion can wait a bit is probably correct. There's another important dimension you can give us - we gather you're female but don't know your age, your general robustness and health (aside from the little odds and ends you've told us about!!) and your family circumstances and support network of friends/family (and new-found friends here). All of these considerations should factor in to making the best decision.

You're in a classic situation where "watch and wait" is almost certainly the best decision on the kidney front to avoid additional surgery at this time (and kidney surgery is, indisputably, major abdominal surgery). but that's still only my (layman's) opinion. You came here because "I was hoping I could get some imput from the expert patients here". Only one or two contributors here are medical experts and even they don't span the areas you need to have taken into account. You'd get access to much better qualified people if you went to the ACOR list called KIDNEY_ONC (still active though soon to be closed and rolled into a very promising new teched-up, high-power site). As with here, on CSN, ACOR has numerous forums that you could look at for the other cancers - I can vouch for the quality of KIDNEY_ONC and I'm guessing the other cancer forums there will be not too dusty either.

On the kidney biopsy question, I'm not entirely clear on your thoughts. Are you saying that if it's a thyroid cancer met it may be amenable to a systemic treatment that would side-step the need for kidney surgery? If you had a biopsy that confirmed RCC, how would that affect your decision-making? If "watch and wait" would be the best policy anyway (pending sorting out the more urgent issues) would it matter anyway? It might allay anxiety to get a biopsy saying not RCC but kidney lesion biopsies have about a 25% false negative record, so you still couldn't be certain. (I don't know whether such a biopsy could determine for sure whether it is a thyroid met - can you throw any light on that question?).

I hope the above thoughts are of some use, rather than just adding to the uncertainties inherent in your situation. I admire your composure and the way you have analysed the situation and I hope you will continue to be your own advocate and will press your doctors for the best advice they are capable of giving in good conscience.

DogRescuer · April 2013

Get the breast MRI ASAP

Having had both breast cancer and kidney cancer, I would strongly advise you to get the breast MRI immediately! *Before vacation* Of the 3 possibilities, a breast tumor should not be put on the back burner.

When I was diagnosed with kidney cancer 4 yrs after breast cancer, my oncologist knew it was a 2nd primary and not mets. They rarely biopsy kidney tumors.

Keep us updated and wishing positive outcomes.

rainsandpours · April 2013

DogRescuer said:
Get the breast MRI ASAP
Having had both breast cancer and kidney cancer, I would strongly advise you to get the breast MRI immediately! *Before vacation* Of the 3 possibilities, a breast tumor should not be put on the back burner.

When I was diagnosed with kidney cancer 4 yrs after breast cancer, my oncologist knew it was a 2nd primary and not mets. They rarely biopsy kidney tumors.

Keep us updated and wishing positive outcomes.

|Thank you to everyone for

|Thank you to everyone for your replies. I'll try to clear up a few tidbits.

I'm female, 40 (41 next month) so right in the prime to get thyroid cancer, a single mom of 1, and I have almost zero support. I'm still working full time or we don't eat. I have good benefits from work that allow me to take Med leave, but it's a sliding pay scale. After 6 weeks off, I'm down to 50%. So I've been holding off going on it until my upcoming surgeries. I live in Canada, so under the provincial health authority. We only have one cancer network here-once you're referred to them, they oversee everything. I've been pushing for 6 months to have my slides/file sent to another expert in Toronto, but they're resistant to that idea. This all stems from their assumption my Thyca didn't need to be treated. My first Rad Onc said "it's not invasive enough". Which clearly isn't the case as it's spreading

I wouldn't say I'm composed. It's more like I'm numb and resigned to dealing with an ongoing nightmare. Frankly, I want off this merry-go-round... and that's why I was seeking opinions about whether to watch and wait the kidney issue. The breast issue almost wasn't even a concern to my doctors. My GP was content to let it wait until my next follow up in Sept, but after palpating the lumps, referred me now. I can't have an MRI until it's scheduled- which takes forever here.

Edit: Regarding the possibility of a thyca met to kidney; yes, it can be treated systemically with RAI (radioactive iodine). That's why I'm debating about the biopsy option. It would eliminate the need for a partial or full neph. I don't particularly trust biopsies though. I had 2 before my partial thyroidectomy, and both came back b9-yet I had a somewhat aggressive variant of papillary cancer.

I do have an Oncologist-but her approach is that nothing is urgent. She won't make any treatment decisions until after my CND in May. She's waiting on the pathology-but even then they are unlikely to do anything. It's frustrating.

I've been dealing with this crap for so long now, that I'm not sure I can keep it up. It's been 16 months since the thyroid cancer was noticed. My upcoming trip was coincidental timing as it was booked last May before I knew any of this stuff, and I'm determined to go while I'm feeling healthy enough to.

My general health is ok I suppose. I have high BP, no thyroid, and low vitamin levels, all of which I take meds for. I'm really dreading them opening up my neck incision for the third time, and there is still a chance I'll need a Sternotomy to get at the sternal tumor. I've done so much reading on this now, that I now wonder if I have Cowden's? It's a genetic disorder that causes thyroid, breast and kidney cancers. I'd like to get tested for it, but that's up to the onc.

rainsandpours · May 2013

rainsandpours said:
|Thank you to everyone for
|Thank you to everyone for your replies. I'll try to clear up a few tidbits.

I'm female, 40 (41 next month) so right in the prime to get thyroid cancer, a single mom of 1, and I have almost zero support. I'm still working full time or we don't eat. I have good benefits from work that allow me to take Med leave, but it's a sliding pay scale. After 6 weeks off, I'm down to 50%. So I've been holding off going on it until my upcoming surgeries. I live in Canada, so under the provincial health authority. We only have one cancer network here-once you're referred to them, they oversee everything. I've been pushing for 6 months to have my slides/file sent to another expert in Toronto, but they're resistant to that idea. This all stems from their assumption my Thyca didn't need to be treated. My first Rad Onc said "it's not invasive enough". Which clearly isn't the case as it's spreading

I wouldn't say I'm composed. It's more like I'm numb and resigned to dealing with an ongoing nightmare. Frankly, I want off this merry-go-round... and that's why I was seeking opinions about whether to watch and wait the kidney issue. The breast issue almost wasn't even a concern to my doctors. My GP was content to let it wait until my next follow up in Sept, but after palpating the lumps, referred me now. I can't have an MRI until it's scheduled- which takes forever here.

Edit: Regarding the possibility of a thyca met to kidney; yes, it can be treated systemically with RAI (radioactive iodine). That's why I'm debating about the biopsy option. It would eliminate the need for a partial or full neph. I don't particularly trust biopsies though. I had 2 before my partial thyroidectomy, and both came back b9-yet I had a somewhat aggressive variant of papillary cancer.

I do have an Oncologist-but her approach is that nothing is urgent. She won't make any treatment decisions until after my CND in May. She's waiting on the pathology-but even then they are unlikely to do anything. It's frustrating.

I've been dealing with this crap for so long now, that I'm not sure I can keep it up. It's been 16 months since the thyroid cancer was noticed. My upcoming trip was coincidental timing as it was booked last May before I knew any of this stuff, and I'm determined to go while I'm feeling healthy enough to.

My general health is ok I suppose. I have high BP, no thyroid, and low vitamin levels, all of which I take meds for. I'm really dreading them opening up my neck incision for the third time, and there is still a chance I'll need a Sternotomy to get at the sternal tumor. I've done so much reading on this now, that I now wonder if I have Cowden's? It's a genetic disorder that causes thyroid, breast and kidney cancers. I'd like to get tested for it, but that's up to the onc.

Quickie update

Hi ya'll. It's been a very long month+ since I posted. In that time I've had 2 surgeries, and went on med leave from work.

On Monday, I'm having a Ct guided renal biopsy on my kidney mass. They've determined it's 70% chance of being RCC, but the Uro wants to rule out mets from the Thyroid cancer. I'm nervous, anxious, and still healing from my neck dissection last Friday.

We briefly discussed options, and I'm a candidate for Lap Partial Neph, however, it's going to be a "long, complex, and difficult" surgery due to a complex hilum, 2 renal arteries and a retroaortic renal vein. My GP explained this to mean that my kidney is a mutant. The Uro guesses the surgery to take 7-8 hours, and posed the option of a Lap Radical, but I want to preserve as much kidney function as possible. I have High BP, so already at risk of CKD. My Gfr dropped from 96 in March to 62 after my contract CTs, and gallbladder surgery. Yikes.

Anyhow, that's the latest.

DonMiller · May 2013

rainsandpours said:
Quickie update
Hi ya'll. It's been a very long month+ since I posted. In that time I've had 2 surgeries, and went on med leave from work.

On Monday, I'm having a Ct guided renal biopsy on my kidney mass. They've determined it's 70% chance of being RCC, but the Uro wants to rule out mets from the Thyroid cancer. I'm nervous, anxious, and still healing from my neck dissection last Friday.

We briefly discussed options, and I'm a candidate for Lap Partial Neph, however, it's going to be a "long, complex, and difficult" surgery due to a complex hilum, 2 renal arteries and a retroaortic renal vein. My GP explained this to mean that my kidney is a mutant. The Uro guesses the surgery to take 7-8 hours, and posed the option of a Lap Radical, but I want to preserve as much kidney function as possible. I have High BP, so already at risk of CKD. My Gfr dropped from 96 in March to 62 after my contract CTs, and gallbladder surgery. Yikes.

Anyhow, that's the latest.

Cfr after Surgery

Hi

Just want to note we have the same mutant kidneys!!!!........well not exactly since I now only have one. My blood pressure is nice an high with a bit of type to diabetes a san added bonus. What I wanted to say howver is my Gfr dropped after surgery but came back in several months. I'm sure there was a reason for this but I forgot to ask.

rainsandpours · May 2013

DonMiller said:
Cfr after Surgery
Hi

Just want to note we have the same mutant kidneys!!!!........well not exactly since I now only have one. My blood pressure is nice an high with a bit of type to diabetes a san added bonus. What I wanted to say howver is my Gfr dropped after surgery but came back in several months. I'm sure there was a reason for this but I forgot to ask.

Hi Don

Did they explain

Hi Don

Did they explain to you what it meant? The Uro did the usual doctor speak, and talked so fast, I had to google every term on my CT report. Sorry to hear about your diabetes too. That's a huge worry, but we have no family history of it.

Is this something I need to truly worry about?

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