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To RCC survivors & families: your input appreciated

InfoLady
Posts: 10
Joined: Aug 2012

I’ve been a lurker here starting 25 days ago when my DH received the report from an MRI (for an unrelated issue) that a 3.6 cm mass on right kidney was “suspicious for RCC.” The rest of the MRI was “unremarkable.” Since then, the following has happened and I could use some input:
DH was referred by his GP to a prominent Urologist at major medical ctr with expertise in partial nephrectomy using DaVinci robot system. Options were discussed and it was agreed the partial was optimal choice, given his otherwise great health and size of mass.
Blood test and CT scan were done pre-surgery. CT scan proved “unremarkable” except for a sclerotic lesion near one shoulder. Another doctor with this practice ordered a full body bone scan to rule out metastasis due to the abnormality (the sclerotic lesion) on the CT. Full body bone scan found no evidence of mets. Tech explained that the sclerotic lesions were symmetrical at the shoulders and not the same “glow” that mets would indicate, and that probably the marks meant the start of arthritis in shoulders, and that bone metastasis often presents randomly on the skeleton on the scan. These tests together with blood test, they ruled out mets.
Partial nephrectomy was successful, no complications. Pathology confirmed clear cell RCC, Stage T1a at 3.3 cm (I still need to ask about the grade), negative margins. We have another follow-up in a few days, but what we know thus far is DH will be under surveillance with scans, initially, every 6 months.
Given this info, I have questions for those of you who have time to offer input:
1. Does it seem we’ve covered all the bases thus far, given that there are no mets as far as anyone can tell?
2. DH has been dealing with GP and an expert Urology team. His Urology surgeon treats many cancers, but I don’t see that he’s "certified oncologist." We are confident with his care, he’s truly top-tier, but I’m curious if/when an Oncologist might join his team of caregivers. Does that only happen if the RCC appears as distant mets?
3. Given that the tests mentioned above found no mets, and given that the T1a tumor was excised with negative margins, does a surveillance-only follow up for the time being seem sufficient? It seems to me that it IS sufficient for now, given all I’ve researched in reputable places (PubMed, ACS, Kidney Cancer Assn, etc.). I guess the reason I ask is that people keep asking me about what comes next like chemo (which I know RCC doesn’t respond to), radiation, meds. It almost makes me feel like I’ve missed something. But it would seem if pathology confirmed negative margins and no evidence of mets to be seen on any scan thus far, there would be no need yet for further treatment.

Any feedback you can give is greatly appreciated. Your posts are very helpful for posters and lurkers alike. You are all very kind, and very brave. Many thanks-

matchframe
Posts: 58
Joined: May 2012

Given that there were negative/clear margins there is no reason to follow up with treatments. There should be nothing there to treat since it was removed.

My RCC sounds very similar to what you described except my Dr opted to do traditional surgery rather than robotic since my mass was so close to the urethral tube. They did not want to risk damaging the tube. I have had my 6 month scan which showed clear and am scheduled for another scan in a few months. After the next scan, I will have scans done once a year to monitor my kidneys.

When my mass was discovered, I went directly to Oncology Kidney Doctors at MD Anderson in Houston, TX. I guess that is totally what you feel most comfortable with as far as including an Oncologist. Personally I felt better including them from the beginning.

InfoLady
Posts: 10
Joined: Aug 2012

Thanks so much for your feedback; it helps to hear from others with experience. I'm glad you are doing well!

-InfoLady

adman's picture
adman
Posts: 257
Joined: Jul 2012

We're the lucky few, my friend.

Last month I had a full nephrectomy 5.0cm Stage 1, Grade 1. All margins were clear. My follow up treatment sounds very similar.

My follow up is CT scan w contrast and blood work at 3-4 months.
I'm thinking about no doing the contrast - NEPH Dr said no to contrast unless something looks suspicious - I have to protect the remaining kidney.

God Bless.

icemantoo's picture
icemantoo
Posts: 1453
Joined: Jan 2010

Info-Lady;

From the sounds of what you wrote everything will be fine. Your husband has joined a special group consisting of only 3& of all Cancers. Unlike others when you join with a minimum of baggage you are basically cured from the surgery although you are subject to regular surveillance which I have been doing for 10 years now. Everything should be fine. As far as seeing an oncologist, is it necessary? No. If available pursue it if you wish. Keep up a positive attitude. At the present time your prognosis excellent.

Icemantoo

enae
Posts: 18
Joined: Aug 2012

Info-Lady,
It sounds like your DH prognosis is excellent.He was lucky that the RCC was caught early and in most cases this is the end of the ordeal.
Don't let cases like my DH scare you. They are rare and he was stage 3a to begin with - 10sm tumor spread locally to the fatty tissue.
If you have a good urologist to keep him monitored stick with him. You just insist on having CT scans not any other test as substitute even if it has been years after the surgery. See an oncologist if you want to hear about available options for post op treatment. There are some clinical trials with meds to prevent recurrence, but since your husband RCC was in such an early stage I don't think that is necessary to consider.
The best you can do at this point is concentrate on getting his immune system strong with nutrition, exercise, supplements.The best book on the subject to me is "Anticancer: A New Way of Life" by David Servan-Schreiber.

Good Luck and use this experience as a reminder to enjoy life every day!

InfoLady
Posts: 10
Joined: Aug 2012

Thanks so much for your reply. It looks like the CT is part of the standard follow-up. I wonder, is MRI also part of follow-up or CT preferred? Of course we'll check with the urologist but I like to hear from others.
I'll also check out that book. I was thinking of looking into a few good resources but so overwhelmed I didn't know where to start.
Best wishes to you, and you are in my thoughts...
InfoLady

dhs1963's picture
dhs1963
Posts: 359
Joined: May 2012

CT with contrast is the primary diagnostic tool. At least that is what my Dr told me.

InfoLady
Posts: 10
Joined: Aug 2012

Thanks for the info and positivity Icemantoo. Re: surveillance -- ten years out is CT the way they monitor you? I'm curious if docs change the method of surveillance over time.
Kudos to you for your tenacity in replying to us all...this space is very helpful.
All best-
InfoLady

icemantoo's picture
icemantoo
Posts: 1453
Joined: Jan 2010

InfoLady,

The last 4 or 5 years (the most recent last week have been by ultrasound of the Kidney and bladder. When I see the Urologist next week I will see what he has in store for next year. Fay across the street is at 17 years and is not receiving any more annual surveillance, She is only 81.

InfoLady
Posts: 10
Joined: Aug 2012

Thanks so much for sharing your info adman. Hope you are feeling good post-op; I'm sending good vibes your way.

Be well-

InfoLady

garym's picture
garym
Posts: 1651
Joined: Nov 2009

IL,

What you are experiencing is perfectly normal, we spend our lives hearing about all the bad things that cancer treatment has to offer, we hear we have cancer and are over run by fear and emotion, then its off to surgery and oh by the way, "you're cured", the whole process leaves us with strongly mixed emotions and many unanswered questions. Your DH and all that are "lucky" enough to catch RCC early are fortunate indeed, trust what your doctors are telling you, stay vigilant, and know that in the unlikely event that it returns there are treatments available today that did not exist a short time ago and new treatments are in the pipeline. As it stands you probably have decades to spend living, laughing, and loving together, enjoy it!

And welcome to the club,

Gary

InfoLady
Posts: 10
Joined: Aug 2012

Thank you Gary. Yes, you are right -- what a whirlwind on a dark rollercoaster. That's why places like this are so valuable; between the rollercoaster, the surgery, and raising kids, I can't squeeze in a moment for my own supportive psychotherapy appointment. And believe me, I can see how lucky we are. Very, very lucky to have excellent care and an early catch, and a place like this for support.
I'm sure I'll return with more questions.
Thanks for the warm welcome...
--InfoLady

dhs1963's picture
dhs1963
Posts: 359
Joined: May 2012

The other thing I have noticed is I am being sensitive to body changes....For example, for the last month I have had a cough for no reason. I have not talked to my Dr, but my hypocondia worries that it is a lung met. There is no reason to expect any issues, but this desease is scary.

And sometimes we do not know what is serious and what is minor.

I truly hate cancer.

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

InfoLady, what a good post! Despite my cautionary note below to adman, about surveillance (and I can understand his reservations about contrast, especially since he has the comfort of being Grade 1) I'd like to echo the reassurances our fellow-members have given you already. Your DH's prospects are so good, with about the best path profile it's possible to get (aside from no cancer in the first place!) that he won't need any further treatment at all unless/until a scan should suggest otherwise, which is very improbable.

You've clearly done your homework and have a better grasp of his position than all of your well-meaning interrogators. You do seem to have covered all the bases. I'm guessing that the path report will show Grade 1 but if it shows a higher grade you might want to discuss more frequent scans, initially, for the reasons I'll illustrate at the end of this message.

I agree with iceman and enae that, as things stand, if you have a good urologist you don't need to see an oncologist. It would be a different matter if he were in the situation of some of us here (e.g. myself - Stage 4 Grade 4 metastatic, necrotic, sarcomatoid chromophobe) where very close surveillance by a board comprising numerous urologists, oncologists, radiologists, nephrologists and specialist cancer nurses, is desirable.

I can't endorse enae's recommendation of the late David Servan-Schreiber's book strongly enough and I'd also suggest that, even before reading it, you watch his absolutely superb accompanying video "anticancer", put out on YouTube courtesy of MD Anderson. That is a good study even if you don't have cancer and have perfect health, if you want to stay that way.

As dhs1963 says, CT with contrast is now the gold standard of monitoring. If using the latest CT scanners and non-ionic, isotonic contrast dye, the risks to the remaining kidney are inconsequential, relative to the value of the information thereby elicited.

That being the case, to MGS I would draw attention to this ACOR warning by one of the highly intelligent list members there, posted 3 years ago:

"I would avoid following text book solutions and focus more on the downside.

I am a sad victim of a medical system which -- for reasons which I may
never understand -- tried to cut corners and skip a CT scan because it was
"unlikely to metastasize" .

That is seriously flawed logic.

Listen, I am "unlikely" to have a car accident every time I drive to the
supermarket but I still fasten my seat belt.

The reason is fastening the seat belt is easy and cheap. The benefit of
wearing a seat belt if I do crash is immeasurable.

Having a CT scan is easy and cheap when you consider the consequences of
missing one.

My doctors skipped a CT scan 6 months after my stage one and successful
partial nephrectomy because the odds were against my having any metastasis
and I looked and felt great.

But 2 1/2 months after that scan- less 6 month checkup I developed a nasty
metastasis which has ruined my life, the life of my wife, and the wife of my
daughter ever since.

You may argue that 2 1/2 months is not a long time and had the metastasis
been captured in July instead of September, the outcome would not have
changed. That is what my hospital argued when I contested this issue. But
I challenged that denial of any accountability.

In September, I was very sick from cancer and my treatment options were
limited.

In July, I was in perfect health and very fit and my treatment options were
unlimited.

"Oh" , they said.

This happened a second time when I was on Sutent. After the 5th cycle, they
skipped a scan because that was the protocol. They did this despite the
fact that there were suspicious shadows on my hip read by one radiologist
after my 3rd cycle. After the 6th cycle, they made a scan. Lo and behold!
I had metastasis where the suspicious shadows were. Another 6 weeks lost.
I did not bother to contest this one with the hospital. I was and am so
disgusted.

Please get scans early and often. The stakes are high so it makes sense to
error on the side of too many scans rather than too few. I just cannot
understand why the medical establishment cannot grasp this point. They
waste so much money on useless tests and treatments in other areas, why
cannot they waste money on too many scans? At least that kind of waste is
efficient and can save lives."

adman's picture
adman
Posts: 257
Joined: Jul 2012

....and agree, which when push comes to shove, I'll probably take the Acetylcysteine 20% mist ( kidney protection agent ) and buck up and use the contrast dye.

What is everyone else using when using contrast to protect the remaining kidney?

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

adman, I'm having CT with contrast about every 12 weeks. The only safeguard I am required to take (and I'm in the hands of experts with all the latest technology)is plenty of water both before and after the scan.

Our valued new onboard expert, medscanman, can throw light on the subject for you.

You might want to ask Fox, if he hasn't already spotted your question, what they recommend for him because he has even more frequent scans (which is why he's such a radiant character, such a beacon!).

InfoLady
Posts: 10
Joined: Aug 2012

Thank you Texas_Wedge for the positive (also sobering) feedback. Cautionary tale noted. I'll ask the MD next week about the grade, and possibly more questions after I find out what grade we're dealing with. Glad that DH is, thus far, on the right track.

brea588's picture
brea588
Posts: 113
Joined: Jul 2012

I had pneumonia the first week of april and in hospital for 8 days. I have COPD and asthma and had never had pneumonia til this year. Seen Doc 3 week later and chest xray had not cleared of pneumonia. So done CT scan of chest and found lesions on my liver and small mass in adrenal gland on the right side. Was sent to GI docs and MRI was ordered and lesions on liver was hemangiomas blood tumors and 2 cm enhancing mass in Right Kidney. Seem a urologist who wanted to wait 4 months and scan again because it was a small mass. I told him no, I wanted to be scanned now. He wouldnt do it. I went for 2nd opinion and urologist oncologist said one option would be to scan in 3 months but for a lot of cases if i chose that option the mass could get its act together and spread and then there was no cure. THen the other options was surgery, partial radical or freezing tumor. I said I want it out. I want it cut and taken out. I am to have surgery Aug 28th and yes I am very scared but at same time i dont really have an option if I am to get the best outcome. If i had stayed with 1st urologist i wouldnt be scanned for 4 more months and who knows what could happen in that time. I read one post on here from 2010 where someone said if mass was small active surveillence is all that is needed it could be needless surgery if you had surgery done. I dont believe that for one minute. The cure for cancer is EARLY detection and not letting cancer grow when it is found. i covet the prayers of everyone during and after this surgery. My Doc has told me it is not an easy recovery and takes time but for a cure I can handle that. Thanks

InfoLady
Posts: 10
Joined: Aug 2012

brea588,

Good for you for voting for yourself. I don't have as much experience as the others in this club (and I am not the patient, it's my DH with RCC) but I can tell you that no time was wasted in my DH's case. When the enhancing mass was found on his MRI (which was done for an unrelated issue), his GP tracked him down night and day until they connected, and the GP already had a referral for him to a top urologist who also did not waste time in seeing my DH, going over options, and, ultimately, performing partial neph. They wasted NO time. We're still spinning after what just happened. Also my DH has mild asthma with, prior to surgery, an allergic cough due to recent crap weather. The GP took all precautions to have him clear for surgery. They didn't think there were mets based on the tests/scans, but all the same they even had him do a full body bone scan prior to surgery because of a small abnormality on CT scan. All that to say: keep yourself in the hands of a team that takes action. It seems like you have that now.
My DH had the minimally invasive (robotic) surgery nine days ago. He tires easily, but he is up and around, walking around the block in the morning and making breakfast for the kids.
Sending good thoughts your way-
InfoLady

brea588's picture
brea588
Posts: 113
Joined: Jul 2012

thats the type surgery i am to have in 10 days. I went thru a lot of testing on thursday and getting everything cleared cardiac and lung clearance. Evertything looks good right now. Glad you DH is doing good and continues feeling better every day. After Tex got through with me not so sure I should be on this web page. But everyone has an opinion. I will go with my Docs first. Have a wondereful day.

InfoLady
Posts: 10
Joined: Aug 2012

brea588,

My humble opinion: of course be on this web page, and keep posting. Yep, everyone has a different opinion, different perspective, and different levels of knowledge. And emotions run high in the face of RCC, or any C. Many members here have valuable input; everyone trying to be helpful the best way they know how.
Glad to hear everything is looking good pre-surgery. All best wishes -- InfoLady

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

The choice of option has to take account of the individual's general health. Your medical history may tip the balance in favour of surgery, particularly if you're going to worry yourself into an early grave if you don't have surgery.

However, you don't even know that you have cancer - you're jumping to conclusions. You had a CT scan in May. Why did the first urologist refuse another CT straight away and suggest waiting another 4 months. Did he explain?

You say:

"who knows what could happen in that time. I read one post on here from 2010 where someone said if mass was small active surveillence is all that is needed it could be needless surgery if you had surgery done. I dont believe that for one minute."

You chose not to believe it but, for anyone in otherwise good health, it's the correct, responsible, expert advice and is the procedure approved by top kidney cancer specialists at this time. With a 2 cm. tumour - tiny - nothing much would be likely to happen in 4 months, the chances of spread are negligible. The time to opt for surgery would be if a scan in a few months time showed a suspicious change. As it is, the tumour may be benign. The tumour might have shrunk (or even disappeared) or not have changed in any way, in which case continued surveillance would probably be best.

Your second opinion doctor was also suggesting a further CT in a few months time but it seems you didn't want that and you're jumping the gun without any grounds, apart from panic. Why did the second opinion doctor also decline to do another CT - did(s)he give an explanation?

I could understand your rush to get surgery if you had had another scan which suggested it was necessary but without it - ? (The cut-off point the experts use is 3cm. which is more than three times the volume of your tumour. Below 3 cm. the indication is for surveillance, not treatment.) You haven't even had a diagnosis yet!

If your lesion turns out to be RCC then its removal will surely help you cope better with your other health problems. I just hope it doesn't turn out that, on top of your other problems, you're putting yourself through unnecessary surgery.

Anyway, you've got the surgery set up, so I hope it goes off really well for you. Don't be too scared - almost everyone here (some here are carers, not patients) has got through it fine and are here to tell their tales. Your tumour is minute - we had a young man on recently who was just about to get married and had a tumour many hundreds of times the volume of yours. Your operation will be a lot easier than most of us had and although it's very sore for one or two days afterwards, you'll sail through it.

So, all the best for the 28th!

brea588's picture
brea588
Posts: 113
Joined: Jul 2012

Thanks for ur input the first urologist did not want to scan again due to radiation exposure is all he talked about. He said yes thre was something there but people are exposed to too much radiation. As for the 2nd doc he said looking at MRI and the enhancement of the solid tumor septations present. He never encouraged me to wait 3 months, he was just saying that sometimes if u wait the suspicious i should say tumor could spread and then there is no cure. He said on Bosniak scale i was 4. Only when taken out and under pathologist will the diagnosis be known of most tumors. My second doc said he did not need another scan since the MRI was recent late June. Im not want ing to have surgery at all . I feel u make it sound as if I cant wait for this to happen. If urologist and oncologist and radiologist believe this is RCC then why shouldnt I think it is so. I never came on here to be put down. I came for encouragement and got that til now. Sorry, I wasted your time.

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

No need to apologise! My remarks were based squarely on what you told us. You didn't mention that you'd had an MRI scan in June, nor that all of your doctors believe you have RCC, nor that the second doc said you're Bosniak 4, nor that any of your doctors had actually recommended surgery (so I'm also sorry you wasted my time).

However, now that we know more of the facts which you didn't mention (you also didn't mention your age), then it's obvious you've made the right decision to go for the op. and, once again, I wish you all the best with the surgery and I again encourage you not to worry too much about it - you'll be fine.

brea588's picture
brea588
Posts: 113
Joined: Jul 2012

Sorry guess i didnt include the lastest scans and information i c where u r coming from. I am a Rn and i have seen so very much in 20 years of nursing that when something like this happens with a new tumor I guess as a nurse i do panic more . I am 56 years old with cardiac history and lung disease. I have a disease of the lungs called bronchiactisis where the airways collapse when lung infections occur and was just diagnosed in april with that. I lost airways in lower right lung and on antibiotics one a day for rest of life. That is one of the reasons the docs are ready to do this now. If I should wait I may not be able to have the surgery at all as my lungs are stable at this time. Im sorry i never meant to insult you and thanks for wishing me luck.

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

Thanks for your gracious reply. As InfoLady commented, we're all here to help each other the best way we can.

With all the grisly things you RNs have seen, anyone can understand why you'd be more worried than us laymen/women! With your medical history, having the surgery now is a no-brainer and, caught early, with the procedure they're doing, it shouldn't be too traumatic.

Wouldn't it be a nice surprise if it improved your overall status? I guess that careful management of pain meds to allow you to breathe as well as possible after the op will be crucial, but you and your docs will know all about that and have it well under control.

We'll all be thinking about you and looking forward to a good report as soon as you feel up to it after the 28th.

brea588's picture
brea588
Posts: 113
Joined: Jul 2012

Thanks for ur reply. It would be a wonderful thing if it did improve my health. As for the pain meds doc has already told me I may be on a vent for awhile after surgery although they are going to try to avoid this with meds during surgery. Tex this is why i am so afraid. The surgery will go ok it will be post op if I have problems. But again I have a plan with lung doc to give me good bronchodilators and manage airways during surgery and hopefully with all of you thinking about me it will help tremendously. Thinking of you too as you travel this journey. Thank you

foxhd's picture
foxhd
Posts: 1855
Joined: Oct 2011

Boy, a ways back it was asked about getting too many scans. I am beginning to worry about the 6 week frequency that I get my chest, abdomen and pelvis scans. I handle the contrast well but the radiation worries me. On the other hand, as part of my trial protocol, I would not have argued about it 6-8 months ago. I will discuss it with my Dr. but she doesn't run the study. As soon as results are at their best, I'm sure changes will be made.

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

Well, fortunately, we now have another expert on board who, I'm confident, will be keen to help a fellow medical professional - I don't suppose it'll be long before medscanman picks up your question. (Funnily enough, I'm wishing my next scan was coming sooner - a bit of abdominal discomfort/pain that's new and next scan will doubtless give the answer as to whether or not it's significant or just a part of the healing process that many of us seem to go through.)

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