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Update on Bladder Cancer

18 Sep 2014 17:45

Hi All, just thought I'd post an update on the bladder cancer journey, one that isn't likely to go anywhere anytime soon. I had a cystoscopy this morning, (not nice) and although there are no visible tumors at this point, my bladder looks like I've been scalded. (He showed me on the monitor.) No wonder I'm having a terrible time with burning. For that reason, they won't be giving me the BCG treatments at this point, at least that's what he said. (I wonder if there's also a correlation to this decision with the world-wide shortage of BCG.) In any case, I will be having another surgery (this is becoming a regular thing in my life) because of the tumor that was removed from my uretha tube, (the tube that goes from the kidney to the bladder) last Feb. This is a new urologist/surgeon I have and he wants to do some biopsies in and around that tube. I guess he's being thorough in making sure he checks everything out, but oh my, don't I like having all these surgeries. It seems like there's always something around the corner waiting, once one has been diagnosed with cancer. Its' a journey that we rarely, or never really get off of for sure.

Thanks for reading.

Lorraine  

Re: Update on Bladder Cancer

18 Sep 2014 18:09 in response to LorraineD

Hi Lorraine,

Haven't spoken for a while. Sorry that you have more uncertainty to deal with. Waiting for tests, results biopsy, or operations are all times we find so difficult to deal with. But at least they are trying their best to look after you and that has to be a good thing.

Take care and I send best wishes and big hugs your way, Brian.

Re: Update on Bladder Cancer

18 Sep 2014 18:16 in response to LorraineD

Hi Lorraine,

So sorry to read your latest update about yet another operation. I suppose on the one hand we have to be reassured that our doctors are doing the very best for us, but it means we are facing yet more invasive procedures and periods of recovery.

I've never had a cystoscopy, but it obviously isn't a pleasant procedure - It must have been quite bizarre to see your own bladder on the monitor too.

(Same surreal situation as watching your own colonoscopy on the screen!)

Is there another drug or medication that you can have to ease the burning you've been experiencing? I really feel for you.

Do let us know when you get a date for your surgery so we can post some virtual, supportive hugs

(Thank you for your post on my new thread, by the way. After I'd posted it and read it back, I felt, that maybe I should have just written my ramblings down on paper rather than post un-newsworthy drivel on the forum! Made me feel better to get it off my chest though!   )

Take care, Lorraine,

sending hugs across the miles!

Jo xx

Re: Update on Bladder Cancer

18 Sep 2014 19:32 in response to Meerkat@65

Thanks Brian and Jo, for your words of encouragement and well wishes. You guys are just such a great source of support that I wonder now, what I would do without you. (Thank goodness I found this forum.) Jo, it was kind of weird watching this take place on the monitor, but confirms what I suspected. He didn't have any words of wisdom as to what I could do to alleviate this problem, but then I really didn't ask. I think if he would have told me I would be given more BCG treatments, I would have had to refuse. I can't even imagine what that would have put me through. It would be like pouring boiling water over a bad burn!!! God forbit!

Jo, you have earned the right to rant on here just as much, if not more, than any of us. Don't even think of apologizing!  You need to be as kind to yourself as you are to others on this forum. You give so much and ask very little in return. I know writing out our frustrations lightens the load a little, even on paper, but people would not likely get to read it on paper like they do on here. Get it off of your chest. Besides, reading about someone else's challenges takes our minds off of our own sometimes, which can be a good thing.

Take care, thanks for the hugs Jo and good luck to you in your journey. Brian, keep up the good work! You must be an icon on this forum by now, are you? I always look forward to reading your posts, not only about forum matters, but also about other projects that you get yourself into.

Hugs.

Lorraine  

Re: Update on Bladder Cancer

18 Sep 2014 20:19 in response to LorraineD

Hello Lorraine,

Just following up regarding your question on another post re my bladder cancer.  I developed uncomfortable urinary tract symptoms last November. Fortunately referred to a urologist within 2 weeks who performed a cystoscopic exam and diagnosed bladder cancer just 18 days after first symptoms had appeared. Turned out to be an aggressive tumor that had invaded prostate. Bladder and all removed in Dec, cancer present in 11 of 30 lymph nodes biopsied. Completed chemotherapy in May and CT Scan was clear. But Aug CT Scan revealed metastatic bladder cancer tumor in my chest. Had that surgically removed two weeks ago, but cancer cells detected in a lymph node and in some chest fluid. Meeting with an oncologist this afternoon to see what comes next. Recovering well from surgery. Some digestive discomfort but otherwise feeling OK.

Hope you're doing well. Take care.

Re: Update on Bladder Cancer

18 Sep 2014 23:57 in response to LuckyGuy

Hi there Lucky, thank you for responding to my question to you. It sounds like you've been through the mill. I'm sorry that you've had such a rough time of it. For me, this is my 3rd cancer diagnosis in less than 5 years, having had colon and lung cancer previously, which as far as I know at this point, those cancers have not recurred. This bladder cancer has me baffled however, since there doesn't seem to be many people out there with it. I'm not sure what is a normal response or reaction, or what isn't. Most people I've spoken, or conversed with are mainly male, so not too many women out there with it. I am told though that this bladder cancer is not related to the colon and lung cancer, so where in heck did this come from. Did you have the BCG treatments, and if so, how did you react to them? I've had severe reactions to them and I'm all burned, including the interior of my bladder now since my last treatments in  May. I had a cystoscopy today and apparently, there are no tumors showing, however, my urologist is concerned about a surgery (big one) that I had in Feb. where my previous urologist removed a large piece on my uretha (the tube going from the kidney to the bladder) because I had a tumor there. He wants  to go back in and take more biopsies there to find out what's going on. Its' a roller coaster ride for sure.

In any case, thanks again for your response and I wish you well in your future treatments and procedures. Stay in touch if you're up for it, although I know you said at one point that you found it too depressing. If that's the case, I understand and respect your choice on that.

Take care. Hugs

Lorraine   

Re: Update on Bladder Cancer

19 Sep 2014 19:43 in response to LorraineD

Hi Lorraine,

I wasn't eligible for BCG which is the more common treatment for bladder cancer. My tumor was aggressive and invasive, not confined to the interior of the bladder but extending beyond to also invade the prostate. The only course was to remove the bladder.

Also had a new metastatic bladder tumor in my chest, invading the thymus, removed two weeks ago. I'm now getting ready for chemo to try to slow or reduce the spread of the bladder cancer, though prognosis is poor.

Re: Update on Bladder Cancer

20 Sep 2014 00:37 in response to LuckyGuy

Hi Lucky Guy, it sounds like you got the rotten end of that stick for sure. I know that when the cancer goes beyond the lining of the bladder that is really bad news. My cancer is very aggressive, but it appears as though they caught it in time and hopefully, it can be contained within the bladder. However, having said that, a tumor did make its' way up the ureter tube? (the tube going from the kidney to the bladder) and I had major surgery last Feb. to have that removed, along with a large section of that tube. It was replaced with a plastic tube and re-attached on either end, i.e. one to my kidney and the other to my bladder. Long surgery - 5 hrs. and blood transfusions. I think the concern now is if one or more of those tumors may have made its' way somewhere else. This cancer is a **** shoot for sure.

So you had your bladder removed, but you still had to have a tumor removed in your chest?  That is not good. Have you had chemo before? I had it when I had colon cancer, but I couldn't tolerate it at all. They figured the chemo would kill me before the colon cancer would, so they stopped it. I know there are thousands of chemo drugs and they have specific ones for certain cancers. I hope you do okay on whatever one they give you.

I would like to hear from you from time to time, if and when you feel up to it, so I know how you're doing. I wish you luck with it and remember, miracles never cease. When do you expect to start treatments? I'll be thinking of you.

Take care.  Hugs

Lorraine 

Re: Update on Bladder Cancer

22 Sep 2014 07:22 in response to LorraineD

Hi Lorraine,

After initial surgery in Dec, I had three months of chemo (cisplatin & gemocidin). Tolerated that fairly well and finished in May. Then tumor in chest showed up on CT Scan in August.

My oncologist said he could start chemo in mid Oct after fully recovered from surgery. That would be with a different drug than before. But he said existing approved drugs abre not highly effective toward metastatic bladder cancer.

He recommended I check into a multisite Clinical Trial of a new drug that shows promising results with metastatic BC. (I live in USA). There is no site near where I live, but I did contact a site near some relatives where I could stay from time to time. The person I spoke with Friday was very encouraging and after talking with me she contacted my oncologist here. I'll find out more tomorrow or Tuesday and am hopeful I may be accepted into the trial thus entering chemo with the new drug. This would involve travel for an injection every three weeks for a year with possibility of continuation if I respond well. Fortunately I participate as an insured with the Health Maintenance Organization that operates the clinic running the Trial, so I would be covered for most costs. If I am accepted, my wife and I might look into renting a place there to reduce the number of trips required.

Once again, I am a Lucky Guy to have a knowledgeable oncologist and the possibility of a new and more effective treatment, plus a supportive family and good medical insurance in a country without universal health coverage.

Re: Update on Bladder Cancer

22 Sep 2014 15:03 in response to LuckyGuy

Hi there Lucky Guy, it appears as though things are happening with a good plan for your treatment. I hope it all works out in your favor and you get to receive this new treatment. Too bad you have to relocate temporarily, in order to take part in the trials but we do what we have to do, don't we?

I live in Canada and yes, we do have universal health care here. Its' not a perfect system, but it does cover everyone regardless of their financial means. Having said that, money and "position" still talks when it comes to who you are, and how much money you have. I have extra coverage on Insurance from where I worked. When I retired, I kept the insurance for a price. It doesn't cover a whole lot, but it helps with some extras that are not covered by universal health care, or Seniors Health Care. I could say a lot more about this, but I'll stop here.

Back to you though, I would like to hear how you are getting along as you start on this new treatment plan. You are lucky to have a good oncologist, a chance for effective treatment, supportive family, and your medical insurance coverage. Let me know if you get accepted in the trial. Here's rooting for you. (Your handle "LuckyGuy" seems to be working for you)

All the best and keep your chin up.

Lorraine 

Re: Update on Bladder Cancer

23 Sep 2014 02:27 in response to LorraineD

Unfortunately I just learned the Clinical Trial has now reached maximum enrollment, so no longer available. Back to plan B