Author Topic: Renal Cell Carcinoma (Read 14943 times)

Katie · « **on:** November 08, 2016, 08:28:04 pm »

I was cured of Hep C March of 2015. Had approximately 9 months of horrible fatigue, depression and other things that would come and go. In April of 2016, I still was cleared of Hep C and had my energy back and my blood work was absolutely perfect and even my cholesterol dropped over 30 points. I can't remember having every single test be totally optimal.

I have had gallstones for over a decade and have an ultrasound about every 2 years. This year I had an unwanted surprise; a small spot on my left kidney. With further tests I have been diagnosed with Renal Cell Carcinoma. The prognosis looks good as it is small, all of my blood work including my kidney panel are absolutely perfect and I am on no medication. (age 70...how did that happen?)

I have been referred to a kidney center and will have to travel out of state for that as soon as possible.

I wanted to post this to see if anyone else has had any type of cancer pop up post treatment as it seems very suspicious to me. My doctor checked another site, which I do not have at this time, and she said there were many reports of cancer with Harvoni success patients post treatment. She is looking into that and when I get the site I will share it.

Please let me know of any similar problems that could be linked with this.

Thank you and I hope everyone is doing well and sincerely hope my case is an isolated one or not even related to Harvoni.

Katie

Mugwump · « **Reply #1 on:** November 09, 2016, 12:17:07 am »

Oh Katie
Another fight, but you are a tough customer! I have a neighbor who recently underwent successful treatment for the same ailment. Hers was more advanced but has gone into remission and she is now active and in decent health. So there is very good success with the new treatments for this condition.

It is discouraging to see some of us clear the virus and then go on to suddenly seem to have less resistance to other problems. You would think that a healthy liver would naturally lead to a better ability to fight off other problems. I am hoping that this is indeed the case.

Keep your stick on the ice Katie we are all pulling for you girl!

Eric

Katie · « **Reply #2 on:** November 09, 2016, 04:33:11 am »

Thank you Eric and good hearing from you. With so little data on post side effects and health issues this needs to be monitored for a possible connection. I feel very positive as I am in such good health and my liver is perfect along with everything else other than some gallstones. Thank goodness for them or I never would have had the ultrasound that it showed up on.

The biggest thing is having to travel as our weather is typical with heavy wind and rain for over a week now and I hate leaving my home but it will all work out.

Take care and keep in touch.

Katie

And yes...I am a tough cookie. I sanded down and refinished my oak floor this summer. It turned out beautiful!

Mugwump · « **Reply #3 on:** November 10, 2016, 02:40:45 am »

Katie, although you have a different form of cancer, to my way of thinking having had HCV for many years has left us more open to other problems as our immune systems slowly degrade with age.
Even if you remove HCV there is still the problem of how well we will respond to other attacks and we do not know how well our immune systems will normalize.

However with HCC the news is not good for us as I am sure any good physician will have informed their patients.

Here is part of a long term study abstract, a bit of a depressing read but not as depressing as being Trumped to the nines as I am sure most sane Americans are feeling about now.

Quote from this source which is quite reputable https://cid.oxfordjournals.org/content/57/2/230.full

Quote

Background. The long-term effect of sustained virologic response (SVR) to antiviral therapy on the risk of developing hepatocellular carcinoma (HCC), liver complications, liver-related death, and overall death in hepatitis C virus (HCV)–infected patients with liver cirrhosis is not fully known.
Methods. These risks were evaluated during long-term follow-up in 351 patients with HCV-related cirrhosis. One hundred ten patients with SVR, 193 with non-SVR, and 48 who were untreated were included in a multicenter cohort that was initiated in 2001 and prospectively followed up for a mean of 5.3 (SD, 2.8 years). Complementary follow-up data from national registries were used to minimize the loss of patients during follow-up.
Results. Six patients with SVR developed HCC at 0.04, 0.64, 2.4, 7.4, 7.4, and 7.6 years, respectively, after achieving SVR. The incidences of HCC, any liver complication, liver-related death, and overall death per 100 person-years were significantly lower in SVR time with 1.0, 0.9, 0.7, and 1.9, compared to 2.3, 3.2, 3.0, and 4.1 in non-SVR and 4.0, 4.9, 4.5, and 5.1 in untreated time. The long-term consequences did not decline significantly after >3 years versus during the first 3 years of follow-up.
Conclusions. The risk for HCC, liver decompensation, and death in patients with liver cirrhosis related to HCV was markedly reduced after SVR, but a long-term risk of developing HCC remains for up to 8 years. Cirrhotic patients with HCV who achieve SVR should therefore maintain long-term surveillance for HCC. Future studies aimed to better identify those with remaining long-term risk for HCC are needed.

On the bright side of the equation I got to fish across from Roche Du Boule and Old Hazelton for the first time in my life and even release a nice buck steelhead!

You can click the pic to see the whole image which is a large one. To my way of thinking if something is going to get me soon I want to at least be in a place like this when it happens. The Skeena at Hazelton is in my considered opinion one of the places put here on earth for the consolation of the soul regardless of the tribulations and strife. Much like where you live.

Foot note for some stupid reason the code on this web site put a cool smiley in the abstract I quoted. GO FIGURE
Thanks for the info about being the culprit, now if there was a way of changing font face and colour and spell check without creating havoc and getting caught in italics that will not change back after inserting a sectional font change. Simple machines is just about the clunkiest BB software I have ever seen almost as bad a using Windows on a touch screen LOL [/color][/i] Well just maybe someone will figure out why.[/color]

Gaj · « **Reply #4 on:** November 10, 2016, 06:19:45 pm »

Hi Katie, your early detection is helpful, wishing you a good outcome.

Hi Mugwump, as you say we don't really know the full impact of long term chronic HCV yet and there probably are some complications but so far the aggregated study results of achieving SVR indicate a considerable reduction in risk for all health outcomes and a statistically significant perceived improvement in "quality of life".

While the HCC study you quote is valid and a concern, that study looked at only those with cirrhosis so to reduce unnecessary worry for other readers I would like to point out that for those without cirrhosis/serious fibrosis the risk of HCC is negligible regardless of whether they have had HCV or not.
The key driver of almost all cases of HCC is cirrhosis (whether from HCV or from other causes for those who have never had HCV) and anyone who has been diagnosed with cirrhosis at any stage needs ongoing monitoring of their liver regardless of their SVR status.

BTW as a fellow fisherman I can really relate to your signature panel and look forward to the time when I can be that carefree again.....just so long as they're using flattened barbs.

Foot note - the cool smiley is because your quote has an 8 followed immediately by a bracket which is one of the smiley codes on here. If you go back and edit it to include a space between the 8 and the ) then it will read correctly.

SongofLove · « **Reply #5 on:** November 11, 2016, 01:29:32 pm »

http://www.prnewswire.com/news-releases/is-there-an-increased-risk-of-cancer-after-taking-direct-acting-antiviral-medication-300360281.html

KimInTheForest · « **Reply #6 on:** November 11, 2016, 02:35:41 pm »

Quote from: SongofLove on November 11, 2016, 01:29:32 pm

http://www.prnewswire.com/news-releases/is-there-an-increased-risk-of-cancer-after-taking-direct-acting-antiviral-medication-300360281.html

I find this a strange and disturbing and poorly written article. Basically the entire article says why DAAs do NOT correlate to an increase in HCC...

But there is one sentence - the 2nd sentence in the article - that says: "However, they [people with HCV who take DAAs] might be at an increased [?] for more aggressive, infiltrative patterns of cancer, should they develop it."

And then it goes on to say nothing more about that! Clearly that is what we want more info on. I would like to find other better articles that give us more info in this "increased [risk?]" for more aggressive infiltrative patterns of cancer. (It seems like a word is missing to boot.)

kim

Gaj · « **Reply #7 on:** November 11, 2016, 05:52:24 pm »

Hi Kim,

This is a press release to engage interest in the actual presentation of the details of the study at the conference, which will occur 4pm Saturday. I'm sure there will be full details then but I don't read the statement made here as contradictory but rather cautionary for those who are already at risk of developing hepatocellular carcinoma. So no increase in the numbers but maybe an increase in the speed of progression for those who would get it anyway?

KimInTheForest · « **Reply #8 on:** November 11, 2016, 06:00:29 pm »

Quote from: Gaj on November 11, 2016, 05:52:24 pm

Hi Kim,

This is a press release to engage interest in the actual presentation of the details of the study at the conference, which will occur 4pm Saturday. I'm sure there will be full details then but I don't read the statement made here as contradictory but rather cautionary for those who were in the process of developing hepatocellular carcinoma anyway. So no increase in the numbers but maybe an increase in the speed of progression.

Well that will be interesting then to see what actually is said/presented tomorrow at the conference, Gaj. I was mainly concerned about the 2nd sentence in the article/press release in which it sounds like they are saying HCV people taking DAAs may be at increased risk for developing other cancers. I'm like "Huh? Where'd that come from? More info please."

Maybe it's just the way I'm reading it...

kim

Gaj · « **Reply #9 on:** November 11, 2016, 06:40:23 pm »

Hi Kim,

I just read the abstract for this, #19 at http://onlinelibrary.wiley.com/doi/10.1002/hep.28796/full

Not a lot more detail but they do specify that they are referring to HCCs.

KimInTheForest · « **Reply #10 on:** November 11, 2016, 06:41:16 pm »

Quote from: Gaj on November 11, 2016, 06:40:23 pm

Hi Kim,

I just read the abstract for this, #19 at http://onlinelibrary.wiley.com/doi/10.1002/hep.28796/full where they do specify that they are referring to HCCs.

Good to know! Thank you, Gaj.

kim

SongofLove · « **Reply #11 on:** November 13, 2016, 04:38:26 pm »

http://www.medpagetoday.com/meetingcoverage/aasld/61390

Katie · « **Reply #12 on:** November 13, 2016, 05:38:00 pm »

Thanks for the comments but since I have a healthy liver and my cancer is in the kidney I was wondering about cancers unrelated to the hepatic system. The kidneys would be a prime place since they flush out any toxins. I was curious and am happy to see nothing that correlates with my issue.

Enjoy your day!

Katie

KimInTheForest · « **Reply #13 on:** November 13, 2016, 07:56:04 pm »

Quote from: Katie on November 13, 2016, 05:38:00 pm

Thanks for the comments but since I have a healthy liver and my cancer is in the kidney I was wondering about cancers unrelated to the hepatic system. The kidneys would be a prime place since they flush out any toxins. I was curious and am happy to see nothing that correlates with my issue.
Katie

Hi Katie. I sent you a DM a few days ago on your topic/question. Hope you got it,

Best,
Kim

Katie · « **Reply #14 on:** November 13, 2016, 08:13:48 pm »

I did Kim and thank you so much! I should find out Monday when I can schedule the procedure. The doctor had to check the CT scan as there is one that is an out patient tx that he said I was a good candidate for since it is small and contained. My preference to surgery, of course, as there is no down time to speak of and traveling is a pain (literally) after surgery. Keep your fingers crossed for me! My big stress is my pets so a quick trip is better for my aging fur baby loves.

Katie

KimInTheForest · « **Reply #15 on:** November 13, 2016, 08:18:03 pm »

Good luck Katie! Hoping you can get that outpatient tx instead of surgery!

kim

Mugwump · « **Reply #16 on:** November 30, 2016, 01:56:53 pm »

Quote from: Gaj on November 10, 2016, 06:19:45 pm

Hi Katie, your early detection is helpful, wishing you a good outcome.

Hi Mugwump, as you say we don't really know the full impact of long term chronic HCV yet and there probably are some complications but so far the aggregated study results of achieving SVR indicate a considerable reduction in risk for all health outcomes and a statistically significant perceived improvement in "quality of life".

While the HCC study you quote is valid and a concern, that study looked at only those with cirrhosis so to reduce unnecessary worry for other readers I would like to point out that for those without cirrhosis/serious fibrosis the risk of HCC is negligible regardless of whether they have had HCV or not.
The key driver of almost all cases of HCC is cirrhosis (whether from HCV or from other causes for those who have never had HCV) and anyone who has been diagnosed with cirrhosis at any stage needs ongoing monitoring of their liver regardless of their SVR status.

BTW as a fellow fisherman I can really relate to your signature panel and look forward to the time when I can be that carefree again.....just so long as they're using flattened barbs.

Foot note - the cool smiley is because your quote has an 8 followed immediately by a bracket which is one of the smiley codes on here. If you go back and edit it to include a space between the 8 and the ) then it will read correctly.

Gaj

I hope you can get on the new multi-variant meds and soon. I would love to cross lines with you on the ponds or streams where I fish. If you can come up to Kamloops BC around May 2017 we could show you around the ponds where the hooks have no barbs and the large O. mykiss take chironomids and then fly 7 to ten feet in the air!

Katie
Ditto on the fish hunt invite.

Sending you both my best thoughts and wishes.

Katie · « **Reply #17 on:** December 26, 2016, 05:03:44 pm »

I began this post due to a spot, which was verified as a tumor, in my left kidney. I underwent surgery and the tumor was benign!!!! The location however was on top of the blood supply so the entire kidney was removed as it would have future ramifications and was also considered pre-cancerous.

The other good news for Harvoni users is that it was NOT caused by the Hep C treatment. Upon reviewing a previous MRI, taken a year before I began treatment, the tumor was found, so it was already something I unknowingly had and was missed in the MRI report. I guess this isn't unusual, even though concerning, since they were checking my lumbar disc degeneration, but you would think, for as costly as an MRI is they would go over every square centimeter very carefully....wouldn't you?

Had this been renal cell carcinoma, it would have been a life threatening miss, and am grateful for my diagnosis the discovery and my overall good health.

I am doing fine and just wanted to let you know and wish everyone a Happy, Healthy 2017!

Katie

KimInTheForest · « **Reply #18 on:** December 26, 2016, 05:10:33 pm »

Very glad to hear your good news on this Katie! (although sorry it cost you a kidney)

And Happy, Health 2017 to you too!

kim

Mugwump · « **Reply #19 on:** December 26, 2016, 08:08:55 pm »

Great news Katie! As you have said going over the scans is especially importantly for us who have had HCV. There is good news coming in the future for scans as new computer AI is starting to assist radiologists in determining if there any small anomalies that are hard for the human eye to discern. The future of diagnostic medicine is very bright and an exciting field of computer technology.

Happy new year and get yourself out on water again and keep fresh fish in your diet.

Cheers
Eric

FutureThinker · « **Reply #20 on:** December 27, 2016, 01:15:22 pm »

Katie ----- HAPPY DANCIN' TIME!! What wonderful news to hear! Hoping 2017 is your best year yet. Happy New Year, FT

Katie · « **Reply #21 on:** December 27, 2016, 04:43:40 pm »

Thanks everyone! Hoping for a good 2017 in my life, but am concerned for my country and what will happen to so many people's insurance. Time will tell!

Eric: The thing is, during the consultation the day before surgery, the surgeon pulled up the MRI as I had forwarded all of my imaging to them. He spotted it immediately and showed me the image and without him pointing it out to me, I saw it within seconds. Granted, I knew where on the kidney to look, but come on. I don't read diagnostic images, and the difference in tissue and the distinct outline of it was obvious, so I am really not impressed and have requested prior images be looked at for comparison. Not that it will change anything now, but they need to be informed of their misses so they pay more attention.

I was fortunate that it was still small and intact and of course, that it was bemign. I had them take pictures of my kidney and have some high gloss photos of my missing part. (us biologists, you know)

brie41 · « **Reply #22 on:** December 28, 2016, 07:45:06 pm »

Hi Katie,

Sorry for what you have been through, but glad to hear that things are going well. Wishing you continued good health in 2017! Brie

kimlav · « **Reply #23 on:** December 30, 2016, 01:39:02 am »

Hi Katie,

I too am concerned about the state and governance of your country.

I am alarmed to hear of your most recent situation but relieved of the outcome thus far.

You were right - I am cured - and I remember your kind words. I wish you the best of health.

Kim in the boreal (first Christmas hep c free in a very long time)

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Author Topic: Renal Cell Carcinoma (Read 14943 times)