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Cause to celebrate, I think…..
I wrote earlier that I was scheduled for a TURBT on Oct 22 due to new tumor found during poke and peak. This is not news to me because for two weeks prior I periodically had blood in my urine and the hospital confirmed it before my poke and peak. Everything went okay for the TURBT and mitomycin instillation except the nausea (could not keep even liquid down for two days) and a rash that lasted about a week. The Oncologist also told me that my Urine Cytology came back “A typical Urothelial Carcinoma-High Grade” – which was the first time – all other cytology and FISH have came back negative, even when I had the first 4 tumors TA G3.
Today my Oncologist called to say that there was no cancer found in the specimen that they removed and that it was bladder dysplasia and probably caused by either BCG or Mitomycin. I asked about the positive cytology as it seems odd it would now be positive (high grade) when for all my other tumors (7 total) it has been negative. He has not received the FISH report as yet which is of course study of the DNA – but this has always previously been negative as well.
So has anyone else experienced this situation, I want to celebrate not having any reoccurances for 10 month but something doesn’t seem quite right. I will have another CT SCAN in January 2008 (14 months after first one) when I have next poke and peek.
Take Care all,
Sandy
Sandra
“Grandmothers are just antique little girls….”17 Replies-
Sandra,
I do understand how it is, waiting for another procedure and more biopsy results, especially over the holidays. I hope whatever they find – if anything — will be superficial, non-invasive and easily treated. In the meantime, have a great Christmas and New Year in your beautiful new home.
David
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Well, Sandra,
I would tell you to “Try not to worry” but I know how impossible that is.
At least, I hope you enjoy your new condo, and the historic area of Leesburg. I also live in a Southern historic town, and the history here sometimes keeps my mind occupied and challenged. I feel very lucky to live here.
Anyway, the very best to you and to your husband for a Happy and Joyous Holiday.
Please keep us posted as to how those tests turn out.Very best,
Rosemary
Rosemary
Age – 55
T1 G3 – Tumor free 2 yrs 3 months
Dx January 2006
Happy Holidays BC Friends – here’s my update.
Had an ultra-sound for new mass seen on recent Ct Scan and it turned out to be a fibroid – good news there. Yesterday I had another Cystoscopy (on the short cycle now due to FISH and cytology coming back for first time with Oct 11 pre cysto as positive – had TURBT on Oct 22) and Oncologist says he sees no new tumors – I said “great no tumors from Santa”… He stated that if my FISH and cytology come back again (as in Oct) positive for High Grade Urothelial Carcinoma then he will schedule me for biopsies next month to look for CIS (no blue light at Walter Reed). I am trying to stay upbeat for the holidays but must say I am more than a little worried as in 11 months all my cytology and FISH came back negative even when I had tumors. It’s hard waiting around “to see” if I have CIS…
So to the happier note, have moved closer to medical, the 200 miles round trip (with the D.C. beltway) was a nightmare, so have been kept busy unpacking and all the other “fun” activities that come with moving from a 3 story lakefront home to a condo – LOL. Leesburg is a beautiful and historic area of VA, so we are settling in.
Again, everyone have a blessed and safe holiday season. My prayer for the new year is a medical breakthru that will stop BC in it’s tracks or a cure, whichever comes first. Enjoy good food, good friends, wonderful family, peace and happiest of days.
Take care,
Sandra
Sandra
“Grandmothers are just antique little girls….”
[quote author=Sandra link=topic=1352.msg10700#msg10700 date=1195575480]
Bladder wall thickning (I forget the exact location). So he stated that he wants me on “short cycle”, which means I have a cysto every 6 to 8 weeks – 12/17 is the now the next one. … Why the “short cycle” for Cystos, I am not sure I understood or was actually given a reason [/quote]
I had thickeing of the bladder wall on my last CT urogram (current one pending). My understanding is that it could be seen with CIS, but my urologist didn’t see anything on the cysto. Still, he ordered the CT urogram I just had and I’m scheduled for full cysto, retrograde urogram, and, I suppose biopsies on 12/6. Gotta try not to freak. I’ve been almost 7 years cancer-free with never a recurrence.
-Warren
TaG3 + CIS 12/2000. TURB + Mitomycin C (No BCG)
Urethral stricture, urethroplasty 10/2009
CIS 11/2010 treated with BCG. CIS 5/2012 treated with BCG/interferon
T1G3 1/2013. Radical Cystectomy 3/5/2013, No invasive cancer. CIS in right ureter.
Incontinent. AUS implant 2/2014. AUS explant 5/2014
Pediatrician
Hi All: Finally received a call from my Oncologist, yesterday afternoon. He stated that the findings from the Ct Scan done 11/11 were as follows: Kidneys, ureters okay. New mass in Uterus (not present at last CT Scan) believed to possibly be a fibroid, but recommended further studies. Bladder wall thickning (I forget the exact location). So he stated that he wants me on “short cycle”, which means I have a cysto every 6 to 8 weeks – 12/17 is the now the next one. Also, I have to get orders from family Army doctor for a Deep Pelvic Ultrasound ASAP (easier said than done with the holidays etc). Why the “short cycle” for Cystos, I am not sure I understood or was actually given a reason (he called as I was standing in the middle of the men’s department in Macy’s). Maybe someone else has had this and can shed some light.
To All – have a wonderful and safe Thanksgiving Holiday.
Take care,
Sandra
Sandra
“Grandmothers are just antique little girls….”You’re not alone…but you’re in about 0.5%…….
Other adverse reactions of intravesical BCG therapy include hepatitis or pneumonitis, each in 0.7% of patients, arthritis and migratory arthralgia in 0.5%, skin rash in 0.3%, epididymitis/orchitis in 0.4%, ureteral obstruction in 0.3%, and bladder contracture in 0.2%.55 Isoniazid is indicated for treatment and prophylaxis in the presence of any of these reactions, and rifampicin should be added when pneumonitis, hepatitis, or epididymo-orchitis is present
Pat
Sandra,
Your symptoms sound pretty suspicious to me, but good luck trying to convince a Doctor that they are BCG related. My rheumatological response came on me like gangbusters exactly two weeks after my 9th BCG instillation and in my heart I know that BCG triggered it. There must have been a propensity for psoriatic arthritis (I have always had psoriasis) just waiting in my body for a trigger for my whole life.
My rheumatoligist did his residency at Duke Medical and he told me that for some reason while he was there the residents injected each other with the BCG virus and that they got some pretty diverse reactions.
My Urologist told me that BCG’s are like aspirin and you can get about 1000 variant responses to it. However, for the record, he had never seen a response like mine.
I’ve still got yeast rashes, and I still have a fairly severe case of psoriatic arthritis.
I’m sorry if this frightens anyone. It is what it is.
Good luck. Please keep me posted so that I don’t feel so alone…. ;)
Your BC friend,
Rosemary
Rosemary
Age – 55
T1 G3 – Tumor free 2 yrs 3 months
Dx January 2006I don’t know Sandra..talk to Rosemary as she is one who also experienced some very strange side effects that they dismissed especially the rhuematologicol side effects.
Pat
Sandra,
Good news on the results. Sounds almost exactly what I went through after my BCG. They saw a LOT of blood in the urine but repeated UA’s all came back negative for infection. Apparently I had a very strong reaction to the BCG (bullous edema – blisters — and the irregular cells – dysplasia). Now, almost 9 weeks after my TURB, things have really calmed down a lot. The doc told me that he feels that the strong reaction to BCG actually may help fight the cancer cells more since the body’s immune system is “revved up” more so than with no or only mild reaction to BCG. Let’s hope he is right. Better dysplasia and inflammation than recurrences of the CIS, leading to removal of the bladder! Thanks for the update and keep us posted.
David
Hi Rosie and David: I went yesterday for Blood work and another UA. Onoclogist called with first results and he said “I didn’t get the results I thought I might” – the first results came back “A – OK” and he is waiting for the other tests that take longer to come back. He was sure I would at least have a bladder infection due to burning, low volume and frequency of urination. But no infection found. He did say I should return to my Primary Care doctor and discuss possible rhuematological issues with him. He thinks that my knee problem last April (and still hurting) was not orthopedic and now the rashes and lumps on tibia and ankle further his belief that they might be rhuematological in nature. He state that this is not side effect from Mitmomycin or BCG …..BUT…..
I have a CT Scan this coming Sunday evening due to positive FISH and positive cytology but tumor removed on 22nd was “bladder irritation” and “dysplasia” and not cancer. Even with the 7 prior tumors (all TAG3) my cytology and FISH were negative. So hopefully by this time next week I will have some answers to all the questions running through my mind. Nausea still comes and goes, but try to keep my mind busy planning our upcoming move and the fastly approaching holidays.
Take care all BC friends,
Sandra
Sandra
“Grandmothers are just antique little girls….”
Hi Sandra, sorry to hear of your rashes and feeling of unwelness. I have heard of many strange reactions from people who had seperate treatments of BCG and Mitomycin in a relatively close period of time. I know of one man who had something like a “boil” in his bladder which was attributed to the double irritation of BCG treatments he had prior to a TURB then a TURB that included one instillation Mitomycin. He had the irritation for a few months. He now says he thinks the Mitomycin “burnt the hell out of the cancer as he has now been free of any recurrence for almost two years since then. What does your doctor say about the “lumps” in your legs? I was advised to drink plenty of water after my TURB to ward off any possible clots. Rosie
Sandra,
Good luck to you as well on your UA and exam tomorrow. Please let us know the results. The inflammation and related problems does indeed cause considerable anxiety and stress.
David Doyle
Hi All: Since posting a few days ago, I have experienced more rashes (had some right after TURBT with Mitomycin), and now lumps in my legs. Also nausea seems to follow me everywhere. I called my Oncologist again today and he was concerned, ordered a UA and blood work to be done tomorrow. Also, said my FISH came back positive and he wanted me to have a CT Scan as early as Walter Reed could do it. I was lucky, got an appt for this Sunday afternoon at 6 p.m. All of my cytology and FISH to date have been negative even when I had all the tumors. So he wasn’t particularily concerned about the cytology but when the FISH also came back positive he thought we should error on the cautious side and go ahead with the CT Scan. I can say I have a general feeling of unwellness (is that a word?) and hope that it is nothing more than the change of weather blahs!
Thanks DDoyle for your answer sounds like we are experiencing some of the same Bladder “iritation” – my last dose of BCG was May 2007, had a Cysto in July and it did not show any “iritation” but in October, there it was. This does lend to the idea that the effects of BCG and Mitomycin last quite a while after treatments. Good luck on Friday, I will be thinking of you.
Take care all BC Friends,
Sandra
Sandra
“Grandmothers are just antique little girls….”
Sandra,
I read your account about the positive cytology report and finding of dysplasia with great interest. I had 6 BCG treatments from May-mid June and experienced very severe inflammation of the the bladder — a LOT of blood in the urine. The Uro called my condition “bullous edema”, meaning puffy, swollen blisters in the bladder. He was concerned enough to perform a TURB biopsy on Sep 7 and what he found was dysplasia (irregular cells which may or not be pre-cancerous). Although he did not say that the dysplasia was caused by BCG, I think it would be safe to say that it most likely was related. Two cytlology reports prior to the biopsy were both negative, which makes me wonder about the accuracy of these tests, given your experiences. Following the TURB my inflammation has improved quite a lot over the past 8 weeks. I don’t see any visible (of course there may well be microscopic blood there) blood in my urine lately. I will have a cystoscopy next Friday and that will give us a better idea of what’s happening. I have not been able to learn a lot about the dysplasia, but apparently it’s a “watchful waiting” type of situation.
Thanks for your replies Rosie and Warren, it helps to know that others experience this as well. Yes my bladder is severely iritated according to Oncologist. To the point that he says I probably will not be able to take BCG treatments again (also have severe reations to it as well) and he will consider “other” instillations if I have a reoccurance. The urine sample was taken before the Cystoscopy. So I think I will celebrate until I get the call with the results from the FISH and then if it’s all clear, I can celebrate until January and who knows, maybe beyond!
Thanks again, take care all,
Sandra
Sandra
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