Follow up care

Jmat23 · February 2015

Hi guys,

I was diagnosed with rcc back in October 2012. 7.5cm Stage 2a, grade 3, no lymphovascular invasion, no necrosis, no intrararenal invasion, so apart from the grade 3 not so bad. 37 years old so on the younger side of the rcc demographic!

Had a quick question regarding follow up scans. I am due for my next follow up 20th Feb and the docs have ordered a CT of the abodomen and pelvis. My urologist mentioned at my last follow last year that the next scans would likely be a chest xray and ultrasound (to cut down on radiation exposure).

I know many of you advocate taking your own care into your own hands which I agree with. Do you think just a CT of the abdomen and pelvis is enough given my specs and time since surgery (October 2012)? To me I would've thought a chest xray would be needed as well as a CT just to be safe.

Thoughts? Always appreciate the advice and positive thoughts on this board. God bless.

icemantoo · February 2015

Even the doctors do not always agree

Jmat.

There is no one size fits all for follow up care. At 7.5 cm it should be vigourous for at least 5 years. There are pros and cons between MRI's and CT scans. Don't be afraid to have a give and take discussions with your doctors and questio why the doctors disagree. It may turn out that the differing doctors speaking with each other may finally agree with each othr.

Icemantoo

sblairc · February 2015

Fox said it best

I can't recall his words but will try to find them to post here later.

My thoughts: Grade 3 is grounds or Chest and Abdominal CT scans in my opinion.

Renal cancer is a sneaky, mean and deadly scourge that lazes around until it feels like rearing it's ugly head. If it was my husband with a grade 3 tumor, I would want an abdominal and chest CT. Metatatic disease picked up early can be treated promptly and surgical treatment can sometimes bring remission for nice stretches without drug treatment especially if the mets are solitary.

Grade 1 or 2, I might roll the dice. Grade 3 or 4, hell to the no. Mention it to your doc and see what he says.

sblairc · February 2015

What does the Fox say?

"Fear of too many scans is inversely proportional to the fear of dieing from advanced cancer. When the odds state your chance of survival is near zero, who cares how many scans you get? On the other hand, if ones cancer is minimal in size and risk of metasticizing is near zero, then not wanting scans makes a bit more sense. I think most of us who have been here a while have a greater investment in close monitoring."

With a Grade 3 tumor, I stand by my other comment. Wishing you many years of NED, report back soon when you are!!!

Footstomper · February 2015

Cut down on radiation exposure?

I think I'd want a proper scan. What are they worried about? Are they afraid of giving you cancer?

NewDay · February 2015

Footstomper said:
Cut down on radiation exposure?
I think I'd want a proper scan. What are they worried about? Are they afraid of giving you cancer?

Chest very important

Jma,

I can't believe he didn't mention the chest. The most common place for RCC to spread is the lungs. Try to push for a CT scan instead of xray because very small tumors will not show on an xray.

Kathy

Jmat23 · February 2015

icemantoo said:
Even the doctors do not always agree
Jmat.

There is no one size fits all for follow up care. At 7.5 cm it should be vigourous for at least 5 years. There are pros and cons between MRI's and CT scans. Don't be afraid to have a give and take discussions with your doctors and questio why the doctors disagree. It may turn out that the differing doctors speaking with each other may finally agree with each othr.

Icemantoo

Thanks for the advice

I agree. It's seems difficult to get an appointment organised to discuss these things here in the public system in Australia. 'Free' healthcare is good but you also feel like just a number. Time to get another opinion

icemantoo · February 2015

NewDay said:
Chest very important
Jma,

I can't believe he didn't mention the chest. The most common place for RCC to spread is the lungs. Try to push for a CT scan instead of xray because very small tumors will not show on an xray.

Kathy

Chest CT v xray

Jma.

Only nodules larger than 8 mm. will show up on a chest xray. Smaller ones will show up on a CT. Those under 8 mm are rarely Cancer at that size. Which is the proper test. Depends on the doctor. I always had just a chest xray than 7 years out a Chest CT for ent issues. The Chest CT showed nodes of 5 and 6 mm. Neither my lung , kidney, ent or Urology doctor had any concern regarding the small lung nodes as far as them repreenting mets from RCC. For what it is worth thats my story. Your doctor may have his own thoughts. One of the advantages of a Chest CT is that they can determine from a later Chest CT whether the small nodes have grown. By the way small nodes to the lung that do not grow are normal to healthy people.

Icemantoo

Jmat23 · February 2015

sblairc said:
What does the Fox say?
"Fear of too many scans is inversely proportional to the fear of dieing from advanced cancer. When the odds state your chance of survival is near zero, who cares how many scans you get? On the other hand, if ones cancer is minimal in size and risk of metasticizing is near zero, then not wanting scans makes a bit more sense. I think most of us who have been here a while have a greater investment in close monitoring."

With a Grade 3 tumor, I stand by my other comment. Wishing you many years of NED, report back soon when you are!!!

Thanks!

Appreciate the advice mate and thanks for the well wishes. Grade 3 is what worries me the most. At 7.5cm the tumour was on the large size but just into stage 2 so all encapsulated. Everything else on my pathology report seemed as good as I could hope (ie no sacramatoid changes, lymphovasular invasion etc) but being grade 3 was dissappointing. Obviously faster growing and more aggresive than lower grades. Interesting that it hadn't spread locally yet as far as they could tell which I hope is a good sign. In saying that I guess cells could have spread at any point in time to distant sites without spread being seen locally. Such a complex process

Jmat23 · February 2015

NewDay said:
Chest very important
Jma,

I can't believe he didn't mention the chest. The most common place for RCC to spread is the lungs. Try to push for a CT scan instead of xray because very small tumors will not show on an xray.

Kathy

Perplexed

Hi Kathy,

Agree wholeheartedly!! It astonishes me that you wouldn't request at least an x ray for the most common site for spread. It really shouldn't take the patient to question these things so it is very frustrating..

donna_lee · February 2015

Jmat23 said:
Perplexed
Hi Kathy,

Agree wholeheartedly!! It astonishes me that you wouldn't request at least an x ray for the most common site for spread. It really shouldn't take the patient to question these things so it is very frustrating..

Only going from personal experience

"My" Stage IV had already invaded the liver and nodes, so CT's were done chest, abdomen and pelvis. At the point the oncologist wanted to reduce the radiation exposure, he started ordering Chest X-ray with US of abdomen and pelvis. At about 4 plus years and we were almost totally at the X-ray/US combo, a yearly CT caught nodes in my thyroid. They turned out to be "Just enlarged but benign nodes," and another 4 1/2 years later he's just starting to give ordering CT's.

I think every oncologist and every patient ends up with a custom tailored plan. Ask! It only takes a little of your time.

Good Luck.

Donna

Jmat23 · February 2015

icemantoo said:
Chest CT v xray
Jma.

Only nodules larger than 8 mm. will show up on a chest xray. Smaller ones will show up on a CT. Those under 8 mm are rarely Cancer at that size. Which is the proper test. Depends on the doctor. I always had just a chest xray than 7 years out a Chest CT for ent issues. The Chest CT showed nodes of 5 and 6 mm. Neither my lung , kidney, ent or Urology doctor had any concern regarding the small lung nodes as far as them repreenting mets from RCC. For what it is worth thats my story. Your doctor may have his own thoughts. One of the advantages of a Chest CT is that they can determine from a later Chest CT whether the small nodes have grown. By the way small nodes to the lung that do not grow are normal to healthy people.

Icemantoo

Thanks!

Thanks for the advice Icemantoo. You are a great help to many on this board.

Yes perhaps my doctor has his own thoughts. It would be great to know what they are and why they have dropped a chest X-ray off the follow up plan. Would rather know their rationale than have it be dropped off purely do to human error. Only problem is the hospital will not allow direct contact with the doctors. As such I have put in a formal complaint and will escalate it with the health commisioner if they do not respond satisfactorily.

As such my appointment has been rescheduled to March 6th and I am having a CT scan of the abdoment/pelvis with contrast. In the meantime I will keep following-up on the chest xray-chest CT question.

Follow up care

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