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Post surgical treatments?
After chemo all diagnostic tests before radical bladder cancer surgery showed no indication of metastasis, Was told by surgeon that One of 14 lymph nodes examined showed cancer cells.
What does this mean for survival?
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16 Replies
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I have been following this thread with interest in that I just had my bladder/prostate removed two weeks ago, have an IC and am going through the leakage problem SABI has mentioned. Thanks to all for the advice and encouragement that things will improve. It’s easier to stay positive when others who have walked this path are able to share their experiences.
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Alleluia!!! They finally discovered my leaking urostomy problem. My surgeon sewed some additional stitches in the skin surrounding the stoma. For the first time, I feel that I may go back to being somewhat normal again. I hope this takes care of the problem. I got my first dry night sleep .
It took a lot of phonecalls and home nurses and wasting boxes of bags, etc. and constant laundering, but now it appears the bags are holding.I was told that the removed bladder was cancer-free, but the final path report showed one lymph node affected. They recommend 3 additional months of chemo. I barely survived the first pre-op months of chemo.
I am in the process of getting a 2nd opinion from another local Cancer center which has an excellent reputation and is not as big and impersonal as the University. SABI
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Sabi,
I hope this works for you. I believe the exact URL is uoaa.org/forum/index.php. I found it with a google search one day and it is very much like this board where people post question, comments and then get answers. It’s a wonderful site full of information.
Jean -
If you google UOAA discussion board you will find a very helpful site for all urostomates. In the search just type in urostomy and you will find all kinds of helpful advise on how to get the ostomy bag from leaking and very helpful information in general.
My best wishes for your recovery.
Jean -
After chemo all diagnostic tests before radical bladder cancer surgery showed no indication of metastasis, Was told by surgeon that One of 14 lymph nodes examined showed cancer cells.
What does this mean for survival?< Hi, Many people with lymph node involvement go on to get long term survival. The cancer is still locally confined, not distant spread and is more treatable and survivable than mets that have spread further. As long as that node is now gone, I would be hopeful that you can be included in that population.. How about the bladder, was there still cancer left in the bladder or did the chemo get it? What does your doctor say about this, are you planning on getting further treatment or waiting? What was your chemo regimen before surgery? About your problems with the bag, I'm so sorry to hear this. But be assured there is a learning curve with all of this and it will get easier with time. You are just out of surgery and haven't had enought time to heal yet, nevermind get the hang of this new equipment. There's a group for urostomy patient's on Yahoo, I've heard good things about it. I think it's called Urostomy. That might be a good one to join up and ask for input. You should also post this forum with ostomy concerns, but using a new subject heading that will catch the attention of browing ostomates. Also, if you are looking for info on possible chemo treatments it might be good to post again with a heading that clearly asks for input on that subject. You're lucky to have your sister there with you now, I don't know either how anyone could survive post-op without help and loved ones around and would hate to ponder the thought. All the best to you, Wendy -
SABI,
I’m not sure where you’re located, but in many larger cities there are groups called “Ostomy Mates”, and they’re experienced with these sorts of problems (bags not sticking to your skin). I know there’s something on the WebCafe about ostomy mates but I don’t recall where exactly it is. Referencing the different problems between neobladders and ileal conduit, I can tell you that I personally was incontinent for a very long time (at least it seemed so to me (it was about six weeks), but when I look back on it now it doesn’t seem like it was so very bad. Something else that helps me feel that way is that it’s been more than two years since my surgery, and once I dealt with the incontinence it’s been mostly smooth sailing since then. I feel certain that once you get the hang of it, there will come a time when you too can look back and feel as I do, that it really wasn’t that bad. That’s what I hope for you, and I think you starting to think that will help you to get through everything now as well. There’s a saying… “The power of positive thinking”, where it comes from I don’t recall, but it is very true.
I remember feeling isolated as well because every time I stood up my bladder emptied, and I’m talking about a cup or more of urine at one time. I went through lots of clothes and lots of adult diapers as well. I hated those things, but even the heavy duty pads weren’t enough for the amount of urine I was loosing. Just know that you will be getting out there, and it won’t be too much longer before that happens.
Now let me give you a little help in the consumption of water department, of course they want us to drink lots of water don’t they. When I went to the continence clinic within the same clinic my urologists office is located, the doctor I saw told me that as long as my urine was a good color (pale yellow – yellow) then I was drinking enough water. What you need to look out for is if your urine starts getting darker that means it’s concentrated and you’re not drinking enough water. The other important piece of information is to restrict your fluid intake in the evening, like say start restricting it around 6 PM or sooner if you go to bed early. After awhile you’ll learn how much you need to drink, how much is not enough, and how much is too much.
I hope these little bits of information will help things improve a little bit, you can even start restricting your fluids this evening and I bet you see some improvement with that one thing alone. Of course you might have a reason to drink some water at night if you have medication you need to take, just remember to try to limit it to only enough to get whatever it is down. If you find that you’re thristy alot try chewing sugarless gum, except be a little careful because some people get diarrhea from the artifical sweetner. I initially chewed lots of it, but finally learned how to limit my intake. I’d put some in my mouth when I’d notice I was thirsty, but I’d just chew it for a short while just long enough to moisten the inside of my mouth and then I’d spit it out into a tissue.
Let me know how you do with cutting back on your liquids, but remember just don’t cut back too much.Lou
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Thank You, Lou,
I am home now with my sister as a full time nurse. She has been doing laundry all day long as I try to control the bags. How do others manage this if they don’t have help.
I am having a terrible leakage problem. Have tried everything. I ran out of 2 boxes of supplies, fortunately, there is a store nearby. The order from the hospital has not come in yet.
I never expected these problems….I was told this was easier to handle than the neobladder. I don’t know.At night, the tubing gets twisted which wakes me up constantly. They want you to drink plenty of water and the urine just gushes out. Hard to get the area dry for the adhesive to stick. Tried hair dryer, wick, etc. Very frustrating.
The home nurse came today, and she had a lot of difficulty , too. Finally, one seems to be intact…We’ll see. She said it may take up to 12 weeks to handle the bags. How can I even go out in public?
The staples come out on Wednesday..I hope the doctor will be in to answer some questions.
The surgery pain has lessened considerably and I am only taking one pain pill daily, so far.
SABI -
SABI,
In an earlier post I mentioned I’d come back and tell you the location of any posts that had some particular information that I share with others on this site, and I did a search and actually found one post where I included the three different items I think might be of some help to you. That post is located under the section NEWLY DIAGNOSED, and was started by Chris1121. The post that has the information I think might be beneficial to you is in the #6 post, and I do hope it’s of some help to you during your time of recovery.
How are you doing today, I expect you’re feeling stronger than when you first posted last week. When is it you get your staples out? I remember being worried about that process, but I honestly found it to be nothing like I expected. The doctor who removed them was quite gentle, plus I’d been listening to some music that I was using for relaxation just prior to their removal and so I think that helped as well. You might consider the deep breathing technique mentioned in the post in the previous paragraph. I was also trying to figure out if you were still in the hospital or if you’d already gone home. Your surgeons nurse can probably give you some help concerning the problems you’re having with the bags seal around your stoma, just let them know this is a problem so they can give you the information you need.
Just keep on keepin’ on, and let us know if we can help.Lou
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Thank you again for the encouragement.
I had 3 months of chemo prior to the surgery and the cancer had gone thru the bladder wall (Stage 3).
I was told that All tests were negative up to the surgery.
I will find out more when I see the surgeon to have staples removed next week. I will ask those questions you mentioned.
He will be presenting my case to the clinical study group and tell me my options.;
In the mean time, I am trying to control my leaky stoma bags…ugh.Some people in chemo frightened me about the neobladder so I chose to go with the ilial conduit……..I don’t know if I made a mistake or not. Anyway..too late.
SABI -
I’m still a little confused as to who I should address, but I will continue with responses anyway. I’m wondering if your surgeon has gotten your pathology reports back yet (or is that where the reference to “one node involved” comes from). I’m curious because you can have frozen sections done while you’re still in surgery in addition to their having final pathology reports on everything that is removed during surgery. I’m also wondering whether or not your cancer was through the bladder wall?
Each day you will get a little stronger and it’s very important to get up and move around to get everything moving again, which I’m sure you already know. But it all takes time and each of us heals differently as well, so don’t be too hard on yourself. You also need to give your body time to get used to functioning in a different way, and give yourself time to get used to it as well.
Keep up the good work of taking care of yourself, and keep us informed as to your progress. You’re in my prayers and I’m sure the prayers of others as well.Lou Graham
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I will use my code name from now on….SABI
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Sorry for the two messages. My sister had posted the original message. But I rec’d them both.
She is helping me as I dictate to her.
I am still not feeling well after the surgery….Incision, leaking, pain etc. I will have my staples removed next week. I had 3 months of chemo before the surgery. I Never had any symptoms except frequent urination and then I was diagnosed with stage III and the cancer had blocked one ureter. What a nightmare these past four months have been -
So sorry, but I just noticed that I perhaps posted to two different people as though they were the same, can someone shed some light on this for me?
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Since you only had one lymph node, perhaps they’ll give you something not so brutal. It’s also possible they could wait for your first official follow-up when you have your ct scan and lab work and that you might have around three months post-op. These are things you can discuss with your surgeon and your oncologist, but what I’m wondering is what your level of disease was/is, when you were diagnosed, and your age (only if you wish to share these things, it’s your choice) and anything else you’re willing to share.
I completely understand your concern about the lymph node that was involved, and I think your doctors might be able to shed some light on what that could mean for you. Although I’m fairly sure there will be others on the WebCafe that will share their thoughts with you as I have, there are some very wonderful people who have gone through what you’re going through and are willing to share their experiences.
As each day passes you’ll feel just a little bit stronger, and with that physical strength will come an inner strength that will help you get through the emotional part of all of this. If you read on the main part of the WebCafe you will find some information that will perhaps help you through all the emotional stuff as well. There are some wonderful books that are suggested reading, and in past posts of mine I’ve suggested some books that I think are excellent as well. I won’t write all that here again, but I will find where I’ve written about them and I’ll come back and give you that information in another message.
You’re in my prayers, and I’m sure the prayers of others as well.Lou Graham
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Thank You for your re assuring words. I am presently one week post surgery and had the ileal conduit. I am mostly concerned about that one lymph node that was positive. I don’t know if I can handle that brutal chemo again.
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