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Wife Had cystectomy yesterday advice please
I know that my wife found this site useful whilst waiting for surgery and I hope you can help again.
She had surgery yesterday which the surgeon is confident removed all the cancer.However Claire did not tolerate the anaesthia well and for safeties sake they decided to do the quicker urostomy procedure rather than the continent diversion.
She was still sleeping last night so had not been told but I know she will be devastated when she is told.I have asked that they dont say anything until I get there this morning.I really dont care what they have done as long as they have got all the cancer and she will always be my beautiful wife and I am just relieved that she came through the operation Ok.Any advice on how to make this seem better for her will be gratefully recieved and also wether at a later date they could go back and make the diversion continent would be useful.
Thankyou once again for your support and help. -
18 Replies
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Oh, Claire, I was so happy to see your post. I have thought about you every single day. My surgery was August 30, and I am still in a terrific amount of pain, but things seem to be just a teeny bit better each day. Thanks so much for posting.
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What a surprise to see you are home. How wonderful. You did so well. I have been watching the board to see how you were doing. Just take it one day at a time and it will all be fine.
I had a meeting with my surgeon today to discuss my surgery and he even said the procedure you had is much easier to take care of when you first come home compared to the pouch so I am still trying to make my decision.
My very best wishes and prayers to you and your family.
Jean -
Hi
I have tried to send PMs to say thanks for support I am home but it keeps coming up with an error message.
So to all that sent messages of support Thank you.
I came home this afternoon and its lovely.I am still really sore and a bit spaced out but its lovely to be back. The urostomy is really easy to look after and in some ways I am glad thats the procedure that was done but I do feel that it makes me look odd and am worried about body image.
It looks like I am going to have to have chemotherapy so will probably be pestering with questions about hthat soon.
Thank you once again -
I know of more people with the same diagnosis who didn’t get chemo and are fine. But there are also those out there who had recurs-even with a lesser stage dx, and had have regrets that they were not offered chemo until things had come back and spread. You just never know in this game and that’s the hard part.
Although there are studies being conducted on this approach of post-op chemo, there haven’t been enough trials done to compare survival with/without chemo. Some feel it’s better to be safe than sorry.
In any case this is a situation that has no hard fast answers, yet. Has your wife been offered the option of joining a clinical trial? That way her experience would also contribute to finding out the best approach.
Whatever happens we all want nothing but the best for your wife.
Keep us posted.
Wendy -
Hello again
I also had T3a and clean lymphnodes and no metastasis. Not sure why they want to give her chemo, but it could be a precaution, just like they do with some other cancertypes when they have reached a certain level. Things should look better for her now, since they probably have checked out the other organs that could be affected. I googled on internet and found several descriptions on chemo as precaution along with cystectomi. Ask the doctor and they will tell you.
And remembering my own cystectomi, you should really know how much it means that you as her husband are in it with her all the way. My wife did the same thing. Please say hello to Clair from me, and as you can see, many here on Blcwebcafe are thinking about Clair, you and the rest of your family.Sincerly,
Knut
Diagnozed first time April 1th 2004.
Muscle invasive, T3A.
Radical Cystectomy June 29th 2004.
Illeal conduit. Bag on my stommack.Steve,
I have had chemotherapy without cystectomy. For transitional cell carcinoma, usually, the recommended chemo is cisplatin + gemzar, if it is intravenous. Basically, platinum salts work for killing these cells. I was also treated after surgery for flushing out any microscopic cells present. The main side effects of cisplatin is nausea and it is also toxic to kidneys. So, the docs should hydrate her before administering that drug. Hydration is very important.Gemzar is not that toxic. Some people have hair loss too with cisplatin. Since the docs are trying to treat only microscopic cells, they might recommend 3-4 cycles of chemo. In my case, since I already had a kidney transplant , I was given 2 cycles of cisplatin + gemzar and 2 cycles of carboplatin+ gemzar. Carboplatin is less toxic to kidneys than cisplatin. You will find more details about the various chemos at http://blcwebcafe.org/chemosused.asp . Hope this helps.Btw, have you had a second pathology opinion.
-Shoba.
S R
Kidney Transplant 1998
Upper Tract TCC, Dec 2004
Native kidney Right Nephroureterctomy Dec 2004
Non invasive bladder cancer,High Grade, Ta,TURB Jan 2012
Native kidney Left Nephroureterectomy Feb 2012
Steve,
I wish I had information I could share, but as the women who’ve already posted I too have not had chemo and have no information regarding it. Hopefully someone who does have that info will read it (your post above) soon and be able to shed some light on the subject for you.
Please send my greetings to Claire, and tell her we’re all pulling for a good solid recovery without any more problems (anesthesia & change in procedure), and we wish that for your sake as well. Just being there to lend your shoulder when she needs it or to offer your arm to help her ambulate in the halls, those are very important things and she’s so lucky to have you there with her.Lou
Thanks so much for the updates regarding Claire. I’m afraid that I am not sufficiently knowledgeable to be able to make suggestions re chemo or the upcoming consultation. Please do let her know that we are asking about her and sending her our best. And do take care of yourself also.
Steve-
Thanks for updating us on Claire’s recovery. I hope you are getting plenty of rest and taking care of yourself also.
I have been fortunate to not have to undergo chemo, so am unable to offer much advice in that regard. I wanted to reply however to let you know I am thinking of you and Claire and lifting you up in thoughts and prayers.
Angela
Hi
I need advice again.First of all thanks for all you messages of support and kindness.Claires doing well she finally woke up properly on Saturday and whilst in a lot of discomfort and still quite woozy is Ok.
We got the pathological diagnosis this morning and its a bit disappointing the top line is T3a N0 M0.She had three tumours and one area of microscopic change within her bladder.Two of the tumours had invaded deeper into the muscle layer and one of those also showed microscopic invasion of the fatty tissue between the posterior bladder wall and the anterior vaginal wall.The cells showed lack of architectural structure and demarcation and were classified grade 3 as expected.
The good news is there was no invasion of either lymph nodes or uterus,vagina,fallopian tubes and ovaries.The bad news is that because of the escape from the bladder her consultant is recomending a course of chemotherapy.He is taking her path results to the departmental meeting on Friday and will come up with treatment recomendations from that.Basically I just want to know what questions to ask what further tests should be taking place etc.They seem very on the ball and we are happy with the care Claire has recieved but it doesnt hurt to be informed.
Thanks Steve
I have sent a couple of messages to Clair prior to her surgery, and despite her reaction to the anestesia, you should be very happy that the results are looking so good. It will take some time to adjust to the bag etc., and the recovery will take some time. Please say hello to her from me, and hopefully we will hear from you again soon.
Sincerly,
Knut
Diagnozed first time April 1th 2004.
Muscle invasive, T3A.
Radical Cystectomy June 29th 2004.
Illeal conduit. Bag on my stommack.
I am so anxious to hear how Claire is doing. Send her our love, please.
Steve,
So sorry to hear that Claire had the reaction to anesthesia, but it’s good they’ve been keeping here somewhat sedated because that is giving her body a little bit more time to heal before she’s fully aware of any possible frustrations. That extra healing time is good for her because I think she may be a little stronger a few days post-op than she would have felt if she’d been alert the first day post-op and have to face the news about the change in procedure type.
When I read Wendy’s post where she mentioned Claire being thrust into menopause, it reminded me of something I experienced during my hospital stay that I didn’t figure out until I was about to be discharged. For days and days I kept having the nurse’s or whom ever to change the setting on the thermostat, and I couldn’t figure out why they couldn’t keep the temperature at a constant level for me. First I’d be freezing, and not long after I would be having to take the covers off, and even my robe. Of course I finally figured out it was because of the hysterectomy, and it didn’t have anything to do with the hospital heating/cooling system. So finally here comes my suggestion and it’s something I would have taken along with me had I thought about it, and that is a hand fan. I actually make fans that I used to use when my son played in the youth baseball program in our community, because here in Alabama it can be in the 100 degree range before the beginning of June. They always had our teams name on them and all the boys names, etc., it was lots of fun. You can possibly find something like what I’m talking about as some businesses hand them out to customers, like funeral homes, banks, athletic concerns. I don’t know if things would be the same there as here, but you might ask someone. Whether or not you find a fan, just being able to tell her why she goes from being hot to being cold in a matter of minutes may help her. I was certainly frustrated myself, but once I realized the cause I had to laugh because I hadn’t figured it out earlier. I think dealing with a surgical procedure and knowing you have cancer is a lot to have going on in your brain and not understanding some of the other things is understandable, but finding the answer makes you realize you’re not nuts!
Don’t hesitate to ask the hospital staff, doctors, nurse’s etc., any questions you might have, the only stupid question is the one you don’t ask. Ask them for emotional support for Claire as well, especially since she’s had the reaction, and also the change from the expected procedure. They’re there to help both of you, but you have to ask for it.
Tell Claire we’re all pulling for her to have a speedy recovery, even though the beginning of it has been rough. We’ve got you both in our prayers and we know where you’re coming from, maybe not blow for blow but we’ve been there.God Bless,
Lou
Thank you so much for the updates. I continue to think of Claire each day and am relieved to hear the news.
Hello
Thanks for your replies Claire is still very sleepy and had quite a bad allergic reaction to the anaesthetic.She is still unaware that the surgery did not go as planned and in the HDU under sedation.
We have had an initial path report that shows no cancer in lymph nodes and grade three T 2B TCC tumours within the bladder muscle so our fears of possable spread look unfounded. This is the first good news for a while .
Regards SteveSign In to reply.
