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New member just diagnose need help to understand this desease

aussieqld
Posts: 13
Joined: Sep 2013

hi everyone.  I was diagnose with rcc last week it was found accidentally. am young strong never been admitted in hospital. Am a husband and father to a 7 month old son.  am having laproscopy surgery to remove it in 2 weeks time.   This is my ct scan report

ct scan confirm large mass 9.3cm in the left lower kidney. displays inhomogeneous enhancement post contrast administration there is internal vascularity noted within the tumour & there appears to be area of cystic degeneration. No invasion of the surrounding spleen or bowel. Liver pancreas adrenal glands appear normal. No filing defect in th renal vein to suggest a bland or tumpur thrombus.lymp nodes are normal  visualised lung bases  are clear, no sclerotic or lytic osseous abnormality. The tumour is confined to the kidney. the appearance are highly likely of renal cell carcinoma.  there is presence of internal calcification does raise the possibilty of a leiomyoma/leiomyosarcoma 

Please help me out I have read slot of stuff online, my urologist assured me I will be fine. 

bit I just need to hear from first hand experience 

 

Sorry for the long post  your help will be highly appreciated 

 

 

 

dhs1963's picture
dhs1963
Posts: 373
Joined: May 2012

On the boards, most people that are cured from surgery "disappear" after a few months.  There are exceptions.  On the other hand, the people that stick around are the ones that are having ongoing issues, that is, metastisis. 

So, the posts and experiences on this board are not always representative.

 

Also, some of the on-line survival stats are based on times when our understanding of the disease was not as good, and treatments were less.

If you look at 5 year survival rates, turn it around to 5 year recurrence rates.  Because 10 years ago, recurrance meant death.  Today, there are options.

 

With that said, if the cancer is constrained to the Kidney, you will be fine (albiet in pain).  90% cure rate from surgery, assuming you are stage 2 (you will not be stage 1 because of tumor size).

 

 

icemantoo's picture
icemantoo
Posts: 1554
Joined: Jan 2010

Aussie.

Welcome to the club which no ome wants to join.  The surgery is not fun but routine and necessary,  Because your tumot  is larger than many there will be scans and tests that follow. There is a small chance of recurrance or spreading. . After surgery and pathology of the tumor the doctor/surgeon should be able to tell you how small.

 

 

Icemantoo

NanoSecond's picture
NanoSecond
Posts: 531
Joined: Oct 2012

Aussie,

Unfortunately it may take you a while to get accustomed to the new lingo in this club that you did not ask to join.

However, it is important for you to pay attention to this:

"does raise the possibilty of a leiomyoma/leiomyosarcoma"

This possibility needs to be resolved quickly because the treatments for renal cell carcinoma (RCC) and sarcomas are completely different - and with entirely different prognosis, etc.

Yes, you will be just fine - if you get yourself under the care of a renal cancer specialist ASAP. Your urologist has done his part of the job but now you will need to become much more proactive.  You will need to hear the opinon(s) of experts to resolve what kind of renal cancer you are dealing with.

I am sure others will soon chime in with their opinions and personal experience as well.

Hang in there,

 

-NanoSecond (Neil)

 

 

 

GSRon's picture
GSRon
Posts: 1253
Joined: Jan 2013

Yes, Neil is spot on..  First concentrate on preparing for the surgery, drink lots of water, watch your diet both before and afterwards.  Heal up.. it will take some time.  But yes, once the lab report is done, then get the right Dr involved.  I think this is most important to get the right Dr.  Keep us posted..

Ron

aussieqld
Posts: 13
Joined: Sep 2013

Thank you all. I've taken ur advise onboard.  my urologist / surgeon seems very optimistic but am still in shock. He reckons it's Been there for at least 5 yrs. I ask him about the calcification raising the possibility of leiomyoma/sarcoma.   He said 30 % of large rcc do have some calcification.  He did mention its stage 2 and it's curable.   thank you again all and i will keep u posted

todd121
Posts: 587
Joined: Dec 2012

Sorry you have this. My tumor was found last November. It was about 7 cm.

I'd advise you to find an RCC specialist (a medical oncologist who specialises in RCC) or another medical oncologist if it turns out to be a different type of cancer as soon as they give you the results of the pathology report. Hopefully you won't need one, but if you do have cancer, see a medical oncologist.

I found my urologist oncologist (the surgeon) who was excellent at what he did, to be a bit deceptive in his presentation of staging and odds on the side of optimism. I don't blame him. I think that was his job at that point. However, one of the things that made me really angry with him was telling me I was stage 1 pre-surgery and not telling me that they wouldn't know the real stage of the tumor until they did the pathology report. I was shocked when my report came back and said I was stage 3. I had been hoping it wasn't even RCC (which they said was a possibility, but not likely) and instead found out it was Stage 3 clear cell RCC.

Until you get that report, there's a lot you won't know about what you have going on in there. The second thing that I got annoyed with him about was not referring me to a medical oncologist soon enough. They are the ones that know about drug studies for adjuvant therapy and really know about the various issues of metastatic kidney cancer and how to treat it. I was fortunate in that my uncle is a retired medical oncologist and when I ran some of the information I was being told by him, I was advised to find another doctor (a medical oncologist) and get another opinion. I'd see one soon after you get your pathology report if it's cancer.

I've been fortunate. No evidence of any more tumors since my kidney was removed last December.

I'm assuming you will have a radical nephrectomy? Or are they doing a partial?

Best wishes for you. I hope it turns out to be minor and the surgery takes care of it. You'll get through the surgery fine. It's a hassle, but you'll do it. Living with one kidney isn't bad.

Todd

aussieqld
Posts: 13
Joined: Sep 2013

i will absolutely do that once i get my report. i had 2 ct scan and both confirmed 9.3 solid mass lesion confined to kidney and nothing on other organs or lymph nodes. stage2 .   And yes they will takeout all kidney 

Thanks for ur advise Todd

srbelle1
Posts: 123
Joined: Jul 2013

we are very grateful that our team is UCSF and very experienced with kidney cancer but each member of that team has his/her own area of expertise.

the oncologist reviewed all of the tests done on my husband and told us that despite the 2 mets to the spine, surgery was the best way to treat. My husband had surgery to remove the lumbar met and cyber radiation (next best to surgery) on the thoracic spot.

the nephrectomy was done last; the surgeon, who is very experienced with kidney cancer told us he "guessed" it would be a grade 3 but that was based on the mets. He allowed 4 hours to do the surgery but took only 90 minutes to remove the kidney laproscopally (sp?) and then told us the nodes looked clear, he removed the tip of the adrenal so there would be clean margins and no opportunity to cut in and risk spread.

each of these docs are vital to this disease. 

The advice of going to specialists is excellent. 

aussieqld
Posts: 13
Joined: Sep 2013

sugery in 12hr or so. Am very nervous I've never had sugery before or admitted in hospital. But I need to get this done.  thank you all for ur advise i Regained my sanity when I found this group. Dr Google drove me into despair

Suekub's picture
Suekub
Posts: 118
Joined: Apr 2013

I had my radical 2 years ago and it was the first surgery I had ever had and I too was very scared. I was really surprised at my lack of pain, only needed the little button for a very short time and left hospital without needing any pain meds at all. Staples out after 10 days. The worst part is waiting for pathology. All the best today. I assume you live in Queensland, I am in Sydney.

Sue

 

donna_lee's picture
donna_lee
Posts: 407
Joined: Feb 2009

I agree with lot's of the above.  You have reason for concern just at the word cancer; but wait until the path report is back on what they remove.  Then obtain the very best advice you can get and plan on any future treatments being effective.  Plan for success, keep us in the loop, keep your spirits high and we'll celebrate with a Foster's.

Donna

cran1's picture
cran1
Posts: 128
Joined: Mar 2013

Surgery will go fine. It's the bloating that's sucks! Hang in there.

todd121
Posts: 587
Joined: Dec 2012

Was thinking about your surgery, which I'm assume has been done by now. Hope you're back on your feet soon.

Todd

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