Do I need a cystectomy now?

Hi Everyone,
As some of you know, I recently returned from a visit to Sloan Kettering in NYC. I had a TURB in June and it came back as "suspicious for invasion" My doctor said that he didn't think so and I thought it was time for a second opinion so I chose Sloan.

I sent all my past records and slides. Sloan's evaluation of the slides from precious path reports said that my tumors WERE invasive and that really scared me. Dr. Bochner at Sloan did another TURB on 8/8. After he had reviewed my past records and slides, he told me that my bladder definitely needed to be removed.

Yesterday he called me and told me that the path report from my recent TURB showed no cancer. However, he still recommends a RC. I am not ready for that if there is no cancer. It is such a life changing surgery and if I can be spared, perhaps for only a few months, then I want that. I know that it is a risk. That the cancer often comes back more invasive and more aggressive, his words, but I have read of so many people who have had success with the BCG even after a couple more tumors.

Maybe I am making the wrong decision by not following Dr. Bochner's advice but I think you must be emotionally ready for that surgery. I feel that I still have a chance to beat this without a RC. I want to continue my BCG and of course the regular 3 month check ups. I probably will need one down the road but I want to feel that it is absolutely necessary. Do you think I am making the right decision? Wow!!! It is a tough one.
Balihigh

By mammaw3n3n
Posted August 16, 2008 at 5:24 pm

hi, balihigh...i know this must all be very scary for you...my husband had bc...they only removed the tumor as they didn't think he could make it thru the surgery...why do they think you would need your bladder removed if there is no cancer?...if the tumors are invasive but not cancer are they life threatening?...in my dh case they believed that the cancer had already spread and that removing the bladder wouldn't do any good as they felt they had gotten all out of his bladder...he went thru chemo and radiation but they still don't know if they got it all or where it had spread to...no one can make the decision about bladder removal but you...i would do a lot of research and ask a lot of questions if there is no cancer involved as to why they think you need surgery...hope this helps...God Bless...Lyn

By fran1
Posted August 17, 2008 at 3:40 am

Hi
I agree, keep doing lots of research and asking questions.
In my husband's case, the cancer was into the bladder wall and although the chemotherapy removed it, the doctors felt that it was too much risk to leave his bladder, so he had a RC. We had no time to be 'emotionally ready', but Richard has no regrets because of the high return rate of BC and we have young kids. Also, because the tumour had shrunk away, it made the surgery 'cleaner' and easier for the surgeons. So far, since his recovery, my husband's quality of life is largely unaffected, just a few niggles, which we don't mind for peace of mind.
So that's one story!
all the best with your decision-making,
Fran

By nancynursez637
Posted August 17, 2008 at 9:48 am

Bali, on what basis do they recommend the RC? The previous slides showing the invasion? It would seem like they would not be recommending it based on the surgery 08/08/08?

I would want more information before going against their recommendations. If there is previous slides showing invasion and the type of cancer is more aggressive, then I would be worried about spread beyond the bladder if I left the bladder intact. Keep asking questions to be sure you have the best information then go with your decision. I can't say whether or not you are doing the right thing, just that if I were in your shoes, i would want a little more information before making that decision. Good luck to you and let us know what you decide,
Nancy

By NYTechy
Posted August 17, 2008 at 10:45 am

BaliHigh - what a dilemma.

While I have no direct parallel to this decision, I am currently undergoing prophylactic chemotherapy for a disease that was supposedly cured by my partial cystectomy this June. The theory being that microscopic traces of my chemo-sensitive tumor may be tidied up best at this time, immediately after the surgery that excised the main mass. The PET scan was clear, but we're going ahead anyway.

Being currently at the physical nadir of cycle 2 out of 6 in the chemo course, I am questioning the wisdom of this treatment. When you are told that you are free of detectable disease, it is sure tempting to take the path of least resistance.

I have not done as much research on the papillary tumors that most BC patients deal with - mine is a different sort. My impression though is that the BCG frequently buys time but less frequently is curative long term, especially in cases where the disease is invasive.

Another thing to consider is that if you do decline the surgery now, then any future RC will be undertaken with the certainty that you are undergoing urgent cancer treatment at the same time.

I really do feel for you, this is a terrible position to be put in - although good news on the immediate prognosis, bearing in mind your earlier misdiagnosis. Sounds to me like you have dodged a huge bullet in finding this invasive disease not to have already spread.

Another thing you might check would be are they proposing removal of nearby lymph nodes, or the bladder alone? That may make a diff to quality of life if you have to have a more urgent RC down the line if the cancer unequivocally is found to be back.

All the best to your family as you make this decision

By Ellen8
Posted August 17, 2008 at 11:42 am

Hello, I certainly can understand your dilemma about not wanting to have RC. I think the reason the doctor wants you to have the RC is because its not in your lymph nodes yet. They are always worried about that stray cell. I had a full hysterectomy and my lymph nodes removed at the same time I had RC. After surgery Dr. Bochner said I am 90% cured which surprised me because I thought I was cancer free. He did not suggest chemo or radiation. I always hear people saying they are cancer free but are they? I have been praying for you since I read about your dilemma, pray like mad and you will come to your decision that's right for you.

Sincerely,
Ellen

By JerseyGuy
Posted August 17, 2008 at 5:37 pm

Balihigh,
I am sorry you have this burden and this decision. I guess this is where I really feel lucky and need to take a back seat to people like NYTecky and Ellen8. My tumor was of the aggressive, high grade type but not invasive. You and a lot of the others have had more to deal with then me.

My thoughts are: Can you continue the BCG, have check ups more frequently then three months and pursue addtional treatments? (Chemo, radiation, etc.) If your Dr. is giving you some time, is it time for a third or fourth opinion? Perhaps that may make your decision easier.

Best wishes
Battle on,
JerseyGuy

By balihigh
Posted August 17, 2008 at 8:27 pm

Thanks everyone for your thoughts. My husband and I have spent every minute this weekend reading and researching. The final answer is: Surgery. I so wanted this cancer to just go away and when the doctor told me- No cancer found, I heard nothing else after that. The reality is that if I have the surgery now, I have a 90% 5 year survival rate. Yes, that is right. Even though the bladder is gone, it can recur in the kidneys or urether. If I put it off and it does come back with invasion into the muscle, the survival rate drop significally.

I am a fighter and I will learn to deal with this. I will miss so much especially my love life. Yes, guys, this is important to us ladies too. That is what was on my mind when I was going to take a chance but my life is not worth it.

I am going to need a lot of support through all this. I let you know when my surgery is scheduled.
Balihigh

By JerseyGuy
Posted August 17, 2008 at 9:56 pm

Balihigh,

You have my support and I believe that of many other friends you have encountered thru this forum. Go with your team that you believe in and all will turn out well. I know I have been lucky up until this point and that the cancer can come back, so I am anxious for the first follow up around November 1. But you have issues at hand and you are addressing them based on the best advise and what sounds like a very supportive husband. Some day I may look to you and others here for encouragement and support.

Please keep us informed as I believe you will as you continue this journey and start planning your next trip, that time will come before you know it.
With best wishes to you and your family.
Battle on,
JerseyGuy

By fran1
Posted August 18, 2008 at 3:33 am

Hi Balihigh

That's such a tough decision to have made., well done for having made the decision. Let us all know how things proceed, we all wish you the best.
Fran

By sarahlee
Posted August 18, 2008 at 6:57 am

Hi Balihigh, I stopped in to check on you,I was thinking of you while trying to keep my mind clear of any BC for a while. Glad I did ,as I want to be here for you while you go through this, I think you have made the wise decision,and I want to wish you luck all the way,sarahlee

By nancynursez637
Posted August 18, 2008 at 8:09 am

NYTech makes a good point on the exploration of the lymp nodes given the fact that some slides show invasive disease. Good luck to you Bali what ever you decide.

Nancy

By balihigh
Posted August 18, 2008 at 11:39 am

Hi Again,
I just can't seem to stay off this site. Ya'll (I'm from the south) are so wonderful and encouraging.

The doctor's office called and my surgery is scheduled for Sept. 5. I must be in NY by Aug. 27 for appointments and another round of tests. That means we will be leaving home this Sunday so this is going to be a very hectic week. I am happy that it is soon. As you know, I am not good at waiting and if I must have it, let's get it over with. The less time I have to think about it, the better off I will be.

We have a small motorhome and have decided to take it and pull our car. There is a park where we can stay that is a little less than 50 miles from the city. A train station is nearby and my husband can use it to come see me in the hospital. When they release me, I would rather be in my own bed and surroundings than a sterile hotel room for a month. We can't come back to NC until I get all the staples out and tubes removed. I understand that can take sometime. My biggest challenge will be finding an internet connector as the motorhome park doesn't have one. I sure will miss everyone while I am thrown back into ancient times. When I am able, it won't be a problem. Keep you updated while I am still home.
Balihigh

By joanmarie
Posted August 18, 2008 at 12:30 pm

My mom may be not a candidate for bladder removal because of her age and overall health. I know its been a hard decsion but it does improve the survival rates significantly. We will all be praying for you.

By joanmarie
Posted August 18, 2008 at 12:36 pm

I couldn't help but notice that you said that your husband would not have survived surgery for removing the bladder. We have had surgery for mom three time since March to remove tumors and blockages from the uretors.Each time there is a new cancer and the process has been very difficult for my mom.

Do you know how they decide who can survive and what the recovery is like?

By balihigh
Posted August 18, 2008 at 12:53 pm

Joanmarie,
I don't think I said that my husband wouldn't survive. He was like me in so wanting me not to have this surgery but reality finally sunk in for both of us.

I don't know exactly what the criteria is for the surgery but the surgery is a very complicated and difficult one. For women it not only involves removal of the bladder but they also do a complete hysterectomy and then they must use part of your intestines to make the connection between the urether and the new stoma. They often remove the lympth nodes too. The doctor said that the recuperation period is about 4 months. I have talked to some on the net that say it is at least a year until you really begin to feel like yourself again. Of course everyone is different. I am hoping that I can be ahead of schedule. Back in my younger days, I had the old fashioned gallbladder surgery. The doctor told me that I would need to be off work for 6 weeks but I was back teaching school after 2. I am a pretty determined person who doesn't do well sitting around. This surgery will be my biggest challenge.
Balihigh

By Karego
Posted August 18, 2008 at 4:55 pm

You have made the decision, so now prepare mentally and emotionally. You said in a posting earlier that you didn't want to lose your love life. My surgery was in Jan '04 (Indiana Pouch) for invasive BC into the muscle wall. I had pelvic exenteration also (everything removed they could) and I am still orgasmic. So, don't give up on that. I'm sure the skill of the surgeon has a lot to do with whether or not the nerves that surround the 'g' spot are interrupted. I don't have a urethra since it also had cancer cells. I have a stoma on my tummy. I am so glad to be rid of the nagging pain associated with the urgency problems we all suffer as BC patients. There are many things to be thankful for post surgery. You will have a 'new normal'. Your ability to rebound will go a long way in your recovery. But, don't expect too much too early. This is major reconstruction, so your body has to heal on its own schedule.
You are in good hands. Trust, but keep up the research. We must be advocates for ourselves. Good healing vibes will be coming your way throughout September. Karego

By Ellen8
Posted August 18, 2008 at 5:55 pm

Hello Balihigh, regarding the internet the hospital has computers in the waiting room on your floor for you and your family to use. Your husband can go to the local library and connect to internet for free.

Where are you staying with the motor home?

I felt relieved that you made your decision.

Also don't worry about your sex life everything still works.

Ellen

By balihigh
Posted August 18, 2008 at 8:43 pm

Thanks Karego and Ellen for your encouraging words. I just thought there would be nothing but echos there with everything gone. The motor home park we will be staying at is near Flanders, NJ. We found it in a campground book, checked it out when we were in NY, and it is okay. The biggest advantage is that it is fairly close to the city. There is one park in Jersey City which would be fabulous but they are so close that they are booked months in advance. I am happy that there are computers at the hospital. I know that libraries have them but I don't know when I will be up to going out like that. It would have been nice to have internet access in the motor home. I could pass some of my time doing what I am now and it would be helpful to my recovery. This park is not that progressive but it should work out.
Bali

By JerseyGuy
Posted August 18, 2008 at 9:50 pm

Balihigh,
Wow, you have such a great outlook. I am glad to see you are looking ahead and positive as to your outlook. It sounds like your putting a good plan together. You will do fine. You will be in our prayers.

Best wishes, I'll post again before the weekend.
Battle on,
JerseyGuy

By Julie7
Posted August 19, 2008 at 11:24 am

Balihigh, If you are planning on doing a lot of traveling in your motorhome after your recovery you might want to look into getting your internet connection through your cell phone plan.
We lived full time in our motorhome for several years and in 2004 we got a PC card from Verizon to put in to our laptop and using their wireless system were able to get the internet in even some remote places. The speed varies depending on the level of cell phone service but in a 3G area it was fast enough.
Now they have cards that connect to your computer through the USB port. Sometimes the wireless service has an offer so the card is a reasonable cost.
The monthly service was about $60. It may be less now. If you get the internet plan with your cell phone service you might be able to use your cell phone attached to your computer to download email.
It was pure bliss to be able to sit in our motorhome and surf the web after having to stand in line for 5 minutes of time to download email for several years in park offices. I know Verizon and ATT have the service I don't know about the other providers but I suspect they do.
We used it for almost 2 years before we had to settle down because of my husband's Bladder Cancer which unfortunately did go into his ureters and renal pelvis on both sides and is now metastasized to his right lung and ribs.
I think you have made the wisest decision. I will be praying for you. Julie

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