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Hi Everyone:
Welcome to a new month already. Hopefully there will be more signs of spring soon. I wish everyone the best this month. I will be going for my cysto April 5th instead of March 22 as my urologist had his surgery schedule shuffled around. I’m okay and am expecting an all clear. I am thinking of who may be having surgery on the 22nd and hope that everything goes well for them. Blessings to all. ((((HUGS))))
Blood tests for CT scan (dual contrast) at mid April, CT is May 4th, its 1st CT post cystectomy (6 months have gone by and still trying to find a flange/wafer system that fits well without stoma irritation). Sure don’t like the 2 kinds of contrast – any advice on getting over side effects quickly. Brian
It’s been a HELLISH year … first saw blood on Feb. 21, 2017. Tests, surgeries, more tests, more surgeries, BCG & AWFUL side effects, kidney & ureter complications … WHEW!!!! I had been healthy for 68 years, and had NO idea how unwell I could feel, or how frightened.
BUT … two CLEAR scopes so far and at the moment I feel GREAT! The next one is on April 18.
(After the 2nd clear scope, I said to my urologist “Can we call it a cure?” He looked absolutely dumbfounded, & said “NO … it’s TEN years for Bladder Cancer.”) So now every day is a blessing! All the best to you ALL!!!
Brian
I have had annual CT scans with dual contrast (I assume that means the drink beforehand and the IV infusion during) for 6 years now. It’s certainly far from my favourite activity, but I don’t really find it that negative, especially because it is the best method to diagnose any recurrence. I have had no side effects at all from the CT. But I do know that some people react to the contrast – perhaps that’s what you are referring to. Is there anything the medical team can do to help with that?
I am so sorry that you are having skin irritation still – 6 months after your cystectomy. Perhaps there are some ET nurses or a clinic available in your area to help with that. For some reason the different products cause different reactions on users. I developed a rash after 2 years of using Hollister products, but my ostomy nurse switched me to Convatec products and that eliminated the irritation.
Good luck with the CT Scan, and I hope that you are able to make some progress in finding a flange that works well for you.
I have a scope tomorrow after having high grade tumors removed from the bladder and ureter in September and January. Nervous times to say the least.
Hi BC experts,
I am having the first biopsy the next week after I had the first TURB at the end of December 2017. TURB was performed with white light and no immediate instillation of intravesical chemotherapy (Mitomycin-C) following the TURB was done.
As I had reported before, the pathology described as A. Intermediate grade (grade 2/3), papillary transitional cell carcinoma.non-invasive. B. No muscularis propia present for histologic evaluation. I have been wondering how they could determine if it was not non invasive when the muscle specimen had not been examined.
Recently I visited my urologist office in this regard. The doctor said that he did not take muscle specimen because my tumor dd not even reach lamina propria. So, it sounds like my tumor was TaG2
Recently I visited it was because my tumor did not even reach lamina propria. So, it sounds like my tumor was TaG2. He also mentioned that he would do the biopsy where the original tumor was. The biopsy will be done under general anesthetic.
Then we talked about possible recurrence. He said I will go under BCG treatment if the recurrence was observed.
Here I have some concerns/questions. Dr. Peter Black, our BCC medical board had mentioned somewhere that much of so called recurrence was actually the original tumor which had been completely removed at the time of TURB. So, if G2 tumor is found in the biopsy, shouldn’t I go through another (deeper) TURBO and wait another 3 months do another biopsy to determine if it was the original tumor not recurrence, rather than deciding that it is a recurrence and put me on BCG treatment?
I prefer not to go through BCG treatment if is not needed.Dr. Shaygen mentioned that 50% of patients quit BCG treatment after one year because of they could not tolerate the side effects in his presentation on treatment option in 2012 Hamilton BCC patients meeting. As a matter of fact, I am scared of going through BCG treatment.
Joey
I have a scope tomorrow after having high grade tumors removed from the bladder and ureter in September and January. Nervous times to say the least.
Just to update. My scope was fine with nothing showing up. I was surprised to see there was a stone in the bladder which was removed while they were in there.
Hi Joey:
BCG is not a walk in the park for the majority of us. I have done 21 treatments; 1 set of 6 (once a week for 6 weeks in 2008) and then another set of 6 in 2010 when I experienced a minor recurrence and that was followed up with 3 sets of 3 (once a week for 3 weeks) approximately 3,6, and 12 months from the first date of the original 6. 2011 was not a fun year. I had cysto checks in between.
The purpose of BCG is twofold. It stimulates the immune system in the hopes of preventing recurrence and also to kill any possible remaining cancer in there. At the very least you want to slow down the number of recurrences and if they do happen they are very far apart.
My side effects were mostly fatigue, burning/bladder irritation, headache, muscle ache and some fever and chills. I had some other side effects as well. It was not fun but it seems to have paid off as I’m now 9 years cancer free. I decided the struggle was worth it to try to save my bladder. Being catheterized each week is not fun. And yes, Dr. Shaynegan is right, some people do have to quit BCG because they can’t tolerate the side effects but that being said you won’t know what effects you will have unless you do it. I strongly recommend (if you haven’t done so already) asking your urologist about the risk level for you should you opt not to undergo BCG treatments if he does recommend them.
I asked this of my urologist when first diagnosed in 2008 and he told me that in my case because the cancer was high grade (G3) I had about a 60-70% of recurrence within the next two years and about a 30% chance of progression should a recurrence happen with no treatment. It was the thought of progression that scared me. Knowing that the cancer that I currently had then was not life threatening but could become that way without treatment sealed the deal for me. When I had to do the extra sets after my recurrence in 2010, I was not pleased but he told me that a set of 6 will give most people a 60-70% chance of success and if you do the extra that success rate went over 85%. No matter what we are between a rock and a hard place and not an easy choice to make.
I’m glad that I put my big girl pants on and got the job done. It wasn’t easy. There were many days of not feeling well, being depressed and feeling down right sorry for myself.
I would raise the issue of biopsy versus what we often call a RETURBT when we are having a surgery on the same site to remove more sample. I agree with your question about removing muscle for sampling and know if it were me I’d be asking about that. Hope my comments help. (((HUGS))))
Well, I got me the “all clear” on April 5th but it hasn’t been a walk in the park. This was Cysto #19 for me and I developed a really bad bladder infection afterwards. I was really sick with fever and severe chills. I’m on my second round of antibiotics prescribed by my GP. The first one Cipro was resistant to the type of bacteria I have. I also developed a yeast infection. This is the first time I have had trouble after a cysto. I did send a fax to my uro’s office but haven’t heard back yet. It is not his protocol to prescribe preventative antibiotics post exam but I will be having that discussion when I see him next spring as I don’t want to go through this ever again.
The current med, my GP said will knock the infection out of the park and will treat my kidneys too which he now suspects may be infected as well. :((( Bummer but getting better.
Hi Marysue,
Thank you very much for your explanation and sharing your personal experience in dealing with BCG treatments. I would have to choose to follow your path had it been high grade. I would keep in my mind what you have mentioned and use it as reference going forward. Incidentally, I have found the following research paper, which explains the study done on recurrence and progression on TaG1,2 with and without BCG treatment. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3913327/
Incidentally, I could not make my lawn mower running so I started taking weeds out. Then I have realized that weeds are like BC. It is not easy to take out the roots of weeds completely. I know they will come back later. Wait! maybe its a sign that I am spending too much thinking of BC.
Joey
Congrats Marysue on the ALL CLEAR!
Joey, in my case I had 3 tumors 2 were small and 1 was large. The 2 small tumors were Grade 1 and the large tumor (5cm) was Grade 2. Because of the number of tumors and 1 being large my Uro opted for BCG treatments. I did have 2 small low grade recurrences during the treatments. The side effects seem to vary by patient, in my case during my 1st 12 treatments I had basically very few side effects, just burning and urgency the day of the treatment. From treatment 13-30 the side effects of burning and urgency extended another day or 2, but fatigue and bladder spasms began and got worse as the treatments extended. I really do not believe I could have handled another treatment.
It seems Uros have a very differing opinions regarding BCG treatments. Below is an article I fond most interesting regarding BCG treatments.
https://www.nature.com/articles/nrurol.2015.58
I wish you all the best,
JackHi Jack,
Thank you for your response and the link to the article. I am amazed that you always come up with a related article out of your hat like a rabbit in a magic show. I hope your improve the trick so one day you could disappear everyone’s BC with your magic wand. I pretty much have memorized your treatment history and marysue’s treatment history as I have read many of your responses to other fellow members. What I did not know that you also had go through challenging time toward the end of your BCG treatment. I am glad that it seems like your perseverance had paid off and your uro’s BCG treatment had worked. I am sure back then you just had to trust what the doctor’s suggested treatment as BCC was not in existence. In this sense, I appreciate very much for you starting up BCC. No wonder I get confused as Uros whom we completely rely upon our treatment have different ideas on BCG treatment. What I got from the paper is that 6 weeks treatment and 3 weeks maintenance at a certain interval till I cannot tolerate the treatment seems to be the recommended approach. What I also worry is that I am 71 and I have other health issues which can be affected by BCG treatment, so all what if scenarios are consuming my mind and it is taking too much of my time. As Marysue said that BCG is the best we have got for now to reduce recurrence, I just dive into it if the doctor says so and deal the other issues as it happens. I understand that no FDA approved drugs for bladder cancer over 20 years till recently. I really hope that recent precision medicine research and development will address bladder cancer not only on late stage BC but also earlier stage BC.
Joey
I’m new to this site and also new to being diagnosed with finding two small lesions during a cystoscopy. I’m scheduled to get surgery for them. The surgery sounds minor and will not take long. However I want to know if anyone has had an epidural during that surgery.
During a regular cystoscopy one can watch what is happening on the monitor screen. I wanted to be able to watch the actual TURb surgery on the monitor as well that was my reasoning to get the epidural. I don’t even know if there is a monitor screen in the surgery room during the TURb procedure? I have a lot of anxiety about the surgery only because when I saw the Dr. After the cystoscopy you wanted to perform a Prostate surgery at the same time. I subsequently canceled any prostate surgery. Dr. Didn’t seem like he really cared what I have to say or explain anything. Not trusting a surgeon and wanting an epidural so I can watch tomorrow seems paranoid but I still want to do it.
I was given the choice with my first TURBT to have an epidural or a general. I opted for the general because of my high level of anxiety. The same went for the second TURBT even though it was a much smaller surgery – one small tumour instead of several.
I too, had a lack of trust in my surgeon in the beginning and while I like watching the cysto exams on the monitor there is no way I’d be awake for the TURBT. I had urological surgeries as a kid and have bad memories from that time and simply could not handle anyone messing with me “down there” while I was awake. I decided that it was better not to be awake at the time and not know anything until I was awake and it was all over. I certainly couldn’t have handled any conversation or comments they may have made during the surgery either.
It is definitely a case of “each to his own” but if you are wanting to be awake simply because you don’t trust your surgeon to do the right thing, there will be nothing that you can do if you are awake enough during the surgery to disagree with what they want to do. You will be under the influence of meds and would not be in any state to make a sound judgement call regarding your health. It is not the right time to disagree with a doctor when they have instruments inside you.
My suggestion is have another discussion with your surgeon prior to your surgery date and get the low down on what the actual plans are and what you have consented to. You mentioned that you cancelled prostate surgery that would have been performed at the same time. Did you have a conversation about the potential consequences of not having that surgery? This second conversation may reveal more information that you either didn’t get or didn’t hear or understand the first time. It is amazing what we don’t hear when under a lot of duress. I recommend taking someone that you trust with you. They may also hear things that you don’t and think of things to ask that you don’t.
If after having a second conversation with your surgeon doesn’t make you feel any more confident in him, and give you a clearer picture of what the treatment pathway will be, I strongly suggest that you consider getting a second opinion. BCC can help with that if needed. Hope that my comments help. Best wishes going forward. ((((HUGS))))
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