Husband Recently Diagnosed

11 years 7 months ago #42770 by jaxmad13
Replied by jaxmad13 on topic Husband Recently Diagnosed
My husband is 51 and is for the most part, but is still recovering from his TURBT surgery. They took a 4 x 3 x 2cm bladder tumor out and a 1.8 x 1 x 0.2cm deep tumor. At this point our doctor has not given us a choice but to take out the bladder. He says it has to come out because there is still tumor and cancer in the bladder wall. We are nervous/anxious for the appointment and to see what our next step is. I am very thankful that we are going to Dr. Michael O'Donnell at the UIHC. I keep telling myself to make a list of notes and still haven't done it. Now that you all have given me suggestions I will be taking care of that. Thanks again.

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11 years 7 months ago #42764 by motomike
Replied by motomike on topic Husband Recently Diagnosed
The very nature of cancer is that the cells spread out into other parts of the body so it is important to get it out as soon as possible. What is his age and is he pretty upbeat. The word CANCER carries a negative connotation, which must be overcome. We are cancer survivors here so rely on us for information and support.
Yes, do take notes.I still have mine. My tumor was 2.5cm. My doc was quite flexable- gave me a choice on avoiding radiation so I just had 41/2 months chemical chemo (no side effects)then removed bladder and prostrate. I got home after about a week in the hospital, walked like a frog for another week then had to deal with an adhesive bag which must be changed every week or so. No doc and no nurse- I had to learn how to do it myself. {groan} Eventually I mastered the procedure and it is now quick and automatic. Regardless of the pain of surgery etc remember the wonderful goal is to hear your doctor saying your husband is CANCER FREE.

I'm 70, retired heat/air contractor. After 4 months of keymo ileal conduit (IC) surgery removed bladder & prostate May 2010

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11 years 7 months ago #42763 by mmc
Replied by mmc on topic Husband Recently Diagnosed
My story is not one of the best ones. I had some complications. I was in the hospital for 12 days. There was a kinK in my intestine where they stapled it back together. They take about 50cm of intestine to create the neobladder and then staple it back together. My suggestion: Ask the surgeon to sew it together. It takes more time but has a lower risk of problems. We didn't know this at the time (about the kink). We just knew my intestines were not wanting to wake up and when they even did they just were not working. So I wound up on IV feeding only for a long time in the hospital. They were x-raying me and the kink didn't show up in the xray. When your intestines are all messed up it is not a happy time!

It took a year and half or so before it was finally figured out to be kink. I had been hospitalized three times for intestinal blockages so finally had them go in and check every inch. That's whey they found the kink and that the upstream side of my intestines had been working out like a body builder trying to push food through that spot. Since I got that fixed I have been fine.

So, back to initial recovery. I got out of the hospital but was still on pain meds and still had a catheter in. My wife is a nurse so she took care of flushing the neobladder through the Foley catheter I had in. I could have done it myself and they taught us how when I was in the hospital but my wife wanted to do it and I was perfectly happy with that. Just involves hooking a big syringe up to a valve on the catheter tube so sterile water could be pushed into the new bladder (neobladder). Then it is drawn back out. Intestines create mucous so that has to be cleared and you don't want any kind of buildup because you want to control how much you stretch the neobladder over time. This stretching is controlled (after the catheter comes out) by having a short schedule for how often he urinates. It will be like every two hours for a while, then adding a little time over time until it gets stretched out to about 400-500cc in size, which is the regular bladder size. The info about that is on the post surgery link I gave you already.

On the 2nd week I was home I started getting online and doing work. I'm a consultant so I can work from home. I could some short calls with people as well. I'd do a little work here and there each day and my attention span and capacity to think and not be exhausted got better every day. The sooner off the darn pain meds the better.

I was frustrated as all get out that even though I was doing the exercises I couldn't control the leaking. Then it just started working. I was able to wear a pad in my underwear and get around and do things without a problem. The doctor would not let me fly for two months but his concern seemed to be more about blood clots and lifting things (like luggage or carry on bags).

It can take six months to fully recover. As for me, I felt pretty much 100% after 5 months and I'd say I was 70% in two months. I was out of shape and overweight to start with though and people in better shape recover faster. I was 47 so from an age perspective my recovery time was ok. Just would have been way better if I was in good shape. That's pretty much the case for everything though I think. :)

When it gets to surgery time, we will give you all the secrets to faster recovery. Users here have varying degrees success and pretty much experience what the studies say. He should chew gum after the surgery (needs to be coherent though and not swallow it). This sends signals to the intestines that they may need to do something. Those signals often shorten the time taken for the intestines to wake up. The key to the universe is waking up the intestines!!!! TRUST ME!

The other thing is walking. He needs to get out of bed the very next day. He will NOT want to and you guys need to discuss this ahead of time because he will not be happy about you telling him to get out of the bed. He will say he can't and he must feel worse than those crazy people on the bladder cancer site did. He will be wrong. We ALL felt like total crap and sort of like an 18 wheeler rolled over us a few times. The first few times out of bed have a nurse come help. He has to be careful about using his abdominal muscles getting into and out of bed. First time, walk in place next to the bed for as much as he can do. Again, this is ALL about waking up the intestines and walking is the magic answer (in addition to the gum). He needs to walk four times a day and more if he can. His doctors and nurses may have a special protocol for walking and if so do that instead of what I am saying. It is usually at least four times a day after the first day.

Once he starts passing gas, they will let him liquids. They will be listening for bowel sounds regularly because once the bowels wake up he can start liquid diet and then move to soft diet and then go home! If he is in good shape this can be in as little as four days but more likely five or six or even seven.

I probably have hit you with too much info now so I will stop at this point.

We know that this is a REALLY scary time for both of you. Know this however--you are going to get even closer in your relationship through this process. He's going to be thinking about you and you are going to be thinking about him and you both are going to be facing this together. You will get through this together!

Hopefully, your husband can even join us here and then he can be asking questions now and then sharing his experience with others down the road. Not only after he gets out of the hospital but years afterward. New people come here all the time. For me, it has been almost 4 years since my surgery so I forget stuff. Folks who had surgery more recently will remember more and hopefully some of them will jump in soon.

Mike

Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results....distant mets
2/2014 ct result...spread to liver, kidneys, and lymph...

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11 years 7 months ago #42762 by upnorth
Replied by upnorth on topic Husband Recently Diagnosed
My father received treatment there in 1988. My mother still talks about how wonderful the staff was. I know that you will be in very capable hands. They will help you understand what is happening, and what they need to do next.

I am so happy that you were referred to them.

Please post to us (If you can) on how things are going while you are there.

Mark

Age 55
Diagnosed BC 12/20/2011 Ta No Mo 0a Non-Invasive At age 48
"Please don't cry because it is over..... Smile because it happened!" {Dr. Seuss} :)

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11 years 7 months ago #42760 by jaxmad13
Replied by jaxmad13 on topic Husband Recently Diagnosed
Thanks for the info Mike and I will take a look at these sites. How long was your recovery if I may ask. I am glad that I have found this site as I feel it will help us tremendously. I am excited to hear the good words about Dr O'Donnell and couldn't be happier about my husband going to him. I will keep you updated.

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11 years 7 months ago #42754 by mmc
Replied by mmc on topic Husband Recently Diagnosed
It is great that you are going to O'Donnell. One of the best in the world.

Ask about the surgery and the recovery time and (as Sara Anne already mentioned) about needing chemo either before or after the surgery.

Ask about nerve sparing surgery for the removal of the prostate. They take that out automatically when they take the bladder.

How long it has been there isn't really relevant but it is a curiosity kind of question. Bladder cancer sometimes has no symptoms at all. Other times, there is blood in the urine that is so microscopic that it couldn't be seen and only would have shown up in a urinalysis for some other random reason. Other times, there is noticeable blood in the urine that should have been a sign to see someone about it.
Sometimes there is pain and sometimes no pain at all.

Depending on how deep in the muscle the cancer is, he may or may not need chemo before surgery. I did not and I was T2 muscle invasive. I am now going on 4 years cancer free and I get checked out every year. During the surgery, they will take a lot of lymph nodes out to see if it has gotten into the lymph system at all. If it has, he will have to have chemo after the surgery.

Time in hospital after the surgery is 5-7 days but some folks have gotten out in 4 days. I had complications and was in for 12 days.

Here is a link that you and your husband should find helpful: www.med.umich.edu/1libr/urology/postcare/cystectneobladder.htm

This link talks about different types of urinary diversions: my.clevelandclinic.org/services/urinary_reconstruction_and_diversion/hic_urinary_reconstruction_and_diversion.aspx

Once you and he read these, you will likely have more questions for your list.
As the doc and ask us. Many of us have had these different surgeries. All kinds of things go into to figuring out the best urinary diversion for him. I chose neobladder because it is the most like normal. I even have complications with mine by I'm still happy about my choice. People who have ileal conduit and those who have Indiana pouch also all (for the most part) seem to be happy with their choice. The choice is really just a "preference" though. Once they are in there, it may be that the choice isn't even an option and they will do what must be done.

This is a flow chart I made a while back about various treatment options based on stage and grade. Some folks have printed this out and found a useful aid to sit down and discuss options with their doctor. www.bladdercancersupport.org/media/kunena/attachments/legacy/files/Bladder_Cancer_Treatment_Flow_Chart-20120112.doc


Glad you found us.
Mike

Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results....distant mets
2/2014 ct result...spread to liver, kidneys, and lymph...

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