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47 yr. old female. Under the care of Dr. Kulkarni at UHN in Toronto. Stage 2 bladder cancer. Muscle invasive, lymphatic involvement, high grade, but no spread to other organs. what is the regular treatment? If chemo is involved, what drugs and how often and for how long. If bladder removal, when does that happen?
I had a similar diagnosis about 6+ years ago. My doctors advised me that cystectomy offered the best long term outcome (65% probability the cancer would not recur and I could live a long life life) Alternatively they could treat the tumor starting with a TURBT, to be followed with 3 months of chemo and then about a month of radiation. The statistics for this treatment option: If the treatment successfully eliminates rhe tumour there would be a 34% probability that a tumor may recur in 5 years.
<p>I couldn’t get my gead around living life with no bladder. I was determined to take the chances associated with the 2nd option. Chemo was difficult but tolerable and radiation treatments were like a walk in the park. At the end of treatment a CT Scan revealed that the tumor was gone. I would continue to be monitored with CT scans initially every 3 months then every 6 months. The more time went by I felt I really made the right decision to forego cystectomy.
<p>Then 1 day I’m relieving myself in the bathroom and I see blood. It feels like it’s 5 years practically to the day. Well it’s back to square 1 and no surprise a similar tumor has invaded my bladder. And this time there are no options. I must undergo a radical cystectomy which will include the prostate. And the surgery will be more difficult due to the radiation treatments I had earlier.
<p>Which way wàs I better off? I did have 5 good years following treatment. And I am 7 months post surgery and having difficulty adjusting to life without a bladder and prostate. I’m also not convinced that it was necessary to remove the prostate. Also if you recall earlier there’s still a 35% chance that this nightmare may still not be over. It seems to me that being faced with a medical issue requiring the patient to make a decision is a lot like going to the casino. There’s always probabilies and ouycomes to consider and don’t forget nothing is ever a sure thing
StephenB
Hi hrudy:
This was obviously not the way that you wanted to start off the new year but hopefully things will get done right and your life yes will change but move along nonetheless.
I have not had to face bladder removal so my response is based on what I’ve learned from those I know that have gone this route.
Many patients are advised to have chemo prior to the bladder removal surgery in the hope that it will increase the odds of a successful outcome. The usual drugs are cisplatin and gemcitabine. Some patients are given a mix of meds often referred to as MVAC (methotrexate, vinblastine, adriamycin and cisplatin). The cycles usually work where you get one drug one week, another at another week and then at some point the drugs are given in combination. You have some off days/weeks in between for recovery. You will be given a schedule of appointments and full info from the cancer clinic where you will have your treatments. Side effects vary widely from person to person. Some tolerate the chemo better than others. Unfortunately none of us have a crystal ball to tell us how we will react to the meds so it is important to get info from the cancer clinic about what to do if you experience adverse effects. Most people do 3-4 cycles of this over about 3 months then are given a period of recovery (usually a few weeks) and then go for the surgery. For some, time is of the essence so they do surgery first and then after a period of recovery have a chemo regime. To learn more about this I would speak to your doctor about a consult with an oncologist if you have not already done so. They know your situation best and can answer questions about treatment options and the pros and cons of each as it relates to your situation.
As for the bladder removal surgery itself, being female you need to ask what body parts will be removed in addition to the bladder. Guys usually get their prostate removed at the same time because the bladder cancer can spread there. For we gals, docs usually remove the uterus, fallopian tubes, ovaries, lymph nodes in the area and possibly part of the vagina which could affect your ability to have intercourse. At 47, if you have not already had a hysterectomy and have not gone through menopause the removal of your reproductive parts most likely will send you into surgical menopause so you may have that to deal with on top of everything else. Not fun, but from what I’ve heard from gals doable in the long run.
So…big decisions in a short period of time;
1) Ask about chemo options – pros and cons of each
2) Bladder removal surgery – removal of other body parts, and the type of diversion you will get
When it comes to the type of diversion – either outside pouch (often called the Ileal conduit), the neobladder which is an internal reconstruction of a new bladder made from a section of your small intestine or the Indiana pouch which is a sort of combination of the two; again it will require a big discussion with your surgeon to find out what option(s) are available for you. Some patients are limited to the outside pouch due to other health issues and/or their situation with bladder cancer. If you do have the option to choose between diversions and you need patient input, contact BCC through their toll free number and leave a message. They will match you up with a patient support volunteer who has had a similar journey and can give you some patient perspective low down on what to expect.
Some patients like Stephen above do qualify to undergo a combination of chemo and radiation treatments and forgo the bladder removal surgery. Your surgeon and oncologist are the best ones to advise if you meet the criteria for this. Since your bladder will remain in you, you need to learn about any potential risks for recurrence and decide which/what you can live with.
I hope that this info gives you something to start with. All the best going forward. ((((HUGS))))
Hi hrudy,
First of all, I believe you are under the care of one of best urologists/surgeons in Canada. I knew the face of Dr. Kulkarni as he is the chief investigator for a clinical trial for BCG non responsive non muscle invasive bladder cancer. It so happened that he was the leading author of Canadian Urological Association Guidelines for muscle invasive bladder cancer. So, you already have given yourself the best chance to deal with your disease. Below is the link to the guideline.
https://cuaj.ca/index.php/journal/article/view/5902/4154
Standard treatment for muscle invasive BCa is to remove the bladder. The guideline says if lymphatic involved (LVI), NAC – Chemotherapy before the removal of bladder is strongly recommended. Chemotherapy can be MVAC or cisplatin and gemistabine combined as merysue explained. I read somewhere that the trend is shifting toward cisplatin + gemistabine. Cisplatin is potent to cancer cells and to normal cells. I have know a few who tolerated NAC but I also know someone who had irreversible side effect. So I would ask if they are going to test if you can tolerate chemotherapy.
If you remove the bladder, there are three choices for urinary diversion. Ileal conduit urostomy with an external bag, neobladder or Indiana Pouch. Ileal conduit is used most often as the surgery is simpler than other two urinary diversions and fit for seniors as it requires less time Neobladder is a continent solution and often chosen for males. Indiana pouch is similar to neobladder but it requires emptying urine from the pouch by catheter every so often. Indiana pouch is often recommended for young (younger senior included) healthy female patients. Whichever urinary diversion you choose, you want to chose the urologist who has done the surgery many times of the urinary diversion you chose.
Also, you may want to start talking with Dr. Kulkarni about immunotherapy also clinical trials.
Eg.
Best wishes,
Joe
Hello Hrudy,
Thank you for sharing your situation with us in the Forums. You have received some pretty comprehensive feedback from other Forum members. That said, I would definitely sit down with Dr Kulkarni and see what he has to say about your questions. Presumably you were going to do that.
In my Support Group we have several Patients who have opted for the external bag and are very happy with their decision. They are living their lives! I thought I would share this so you realize that the external bag option seems to be working well.
Best wishes to you! Sending positive thoughts your way, that all will work out for you.
Thank you for your input Stephen. I consider myself young and don’t want to lose my bladder, but I definitely don’t want to gothrough all of this again.
Thank you MarySue for answering all of my questions. So many decisions to be made, it’s good to hear from others who have been there.
Thank you Joe for your input. I researched Urologists/surgeons at the beginning of my journey and feel very confident with Dr. Kulkarni. I will be sure to ask the questions you suggested.
Hi,
I am 50 and was diagnosed a month ago. I start neoadjuvent chemo next week and was told my best change of remission with the complete cystectomy. If I had a choice I would do the chemo/radiation because I, too, am really not ready to face life without my bladder as I am so young. I have been reading people’s posts and feel more encouraged. I am a single Mom and the most important thing is to be here for many years to come for my kid. Admittedly, I’ve never been so scared in my life. What did you end up deciding?
Karen
Hi Karen:
The decision to have your bladder removed is not an easy one. As you have probably learned it is a very big surgery that will take a few months to recover from. Have you had any discussion with your surgeon about which type of diversion you would best benefit from? It may help you to have a conversation with a female patient that has had that type of surgery. And if you are offered more than one type of diversion you could have a conversation with a woman that has had each option to ask questions about the pros and cons. That in itself could help you decide on what is best for you. You can phone the toll free number at Bladder Cancer Canada and leave a message with this request. They will do their best to match you up with a Patient Support Volunteer that has been through it. Also, I would ask your surgeon if you haven’t already done so- will you need to have a hysterectomy as well? If you have not already had reproductive organs previously removed this is another consideration for women. Depending on the situation it may be necessary to remove all or parts of the reproductive organs – ovaries, fallopian tubes, uterus, cervix and a portion of the vagina. Your surgeon can advise you of your options on this.
I did not have to have my bladder removed nor did I do chemo/radiation so my comments are based on what I have learned from others. What I’ve heard is the biggest factor from those that do qualify for the choice of the chemo/radiation regime instead of the bladder removal surgery is that you have to keep in mind that it may or may not work and after all those treatments you may end up having to remove your bladder anyhow. This could potentially make your cancer journey a much longer and complicated one. But that being said, there are those that have chosen this route and been successful.
Feeling afraid is normal. We all go into shock when first diagnosed and it is hard to digest what we hear and accept what we may have to do in terms of surgeries and/or treatments. Often, a lot of decisions have to be made in a short period of time and our head whirls with all the unknowns and “what ifs”.
Hang in there and best of luck starting chemo. Questions will come up and we encourage you to ask away. Someone will have suggestions. ((((HUGS))))
Hi Karen,
Below is the link to a video a 40 years old mother of 3 sons speaking her experience on removing her bladder due to her diagnosis of muscle invasive stage 2 (stage T2) BCa. The video was the recording of BCC patients education seminar which was held in May, 2012 in Montreal. From the video, we can tell she also had neoadjuvant chemotherapy before the surgery to remove the bladder.
You will notice that she chose Indiana pouch. It is the type of urinary diversion which is often recommended to younger female patients.
As Marysue has mentioned, you will be given three choices of urinary diversion – Ileal conduit (with external bag), neobladder and Indiana pouch. You will have plenty of time to find out which urinary diversion will suit your lifestyle after the surgery. BCC is a good resource for your getting feedback from those who had chosen different urinary diversions.
There are many urologists who can do Ileal conduit urinary diversion surgery but no many urologists will (or can) do neobladder or Indiana pouch urinary diversion. For neobladder or Indiana pouch, you may need to go to large university hospitals.
Best wishes
Hi kjc18,
Your timing is impeccable. I am undergoing surgery tomorrow. I chose the neobladder option, with the Indiana pouch as the backup. I’ll get back to you in a month or so on how things are going with it. Good luck with everything in the meantime.
Hi Trudy,
How are things going with the neo. I’m two weeks post-op. Right now I’m slightly freaking out as I took out my catheter this morning and now I can’t get my muscles to work and can’t pee! Waiting for the dr to get back to me this afternoon. I don’t know what to do!
Hope all is well with you!
Karen
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