Recovery Time

Recovery status sixty days after operation. Went to NYC for my consult with the oncologist. We were told that I am cancer free after reviewing all the tests taken during the operation. However; with the agressive cancer that I had and that a lynth node had to be removed the possibility of a reoccurance of cancer is highly possible based upon medical studies. As a result the doctor suggested I undergo a four month period of chemo. This could result in kidney failure, reduction of the immune system, physical problems such as neuropahy etc. Also, I know what my patients went through and it is not good. Interestingly, the stats indicate that you only increase your chances of not having the cancer return by 15%. We therefore have opt to monitor via cat scan quarterly. We can treat it but not cure
it. If I was younger I may have opt for the chemo. We will now use our local medical facilities for review and detection. It is still very good news being free of the cancer at this time although I am still weak and concerned that I am so slow in returning to normal although everyone tells me it takes the full ninety days before you start feeling better. I believe in quality of life not quanity.
nanaca

Today almost six weeks after surgery I have started to feel better, stronger and starting to eat and gain weight. I still have some discomfort but a new mattress has helped the back, visiting nurses has helped with a wound I got after someone removed a staple and left a five inch wound that had to be packed every day ( no infection), and the support of family and friends. We expect several months to pass before we are back to normal. I have been installing the bag myself with very little problems. Been trying different types of equipment from Hollister. Will soon have them pre-cut and make it even easier to install.
nanaca

Grteetings : It appears that recovery time was the appropiate name for us since we seem to be focused on this subject once the decision regarding the type of operation has been made. Nancy wanted me to write to all of you and thank you for all the prayers and interest regarding her progress. It is also interesting that there have been so many people visiting this site. We hope it has been helpful to them.
There continues to be constant pain through-out the body with significant pain in the left knee of all places. Nancy walks through this pain and is determined to get over it. Most of the discomfort continues to be at night. Eating at this time also is difficult and is at a minimum. She is back on to a couple of alleve pills every four hours. We are careful not to induce any form of bleeding from the alleve. We are now past week three after the operation. We will post again after we meet with the oncology specialist to determine if chemo is necessary in a few weeks. Dick for
nanaca

Hi
So glad your recovery is continuing to go well but obviousley I was upset to read how closely your path results mirrored mine.My consultant took my case to the cancer board meeting (a uk best practice thing were all the specialists sit down and discuss the best options ).They all agreed that once the cancer is on the outside of the bladder wall ie all the way through the muscle not going ahead with chemo is not an option.My tumour was very aggressive so that may have influenced them but they agreed my chances of still being around without chemotherapy in five years were less than 10%.
Really it was a no brainer to go ahead.I am currently in the rest period after my second treatment of four I am recieving CMV which is Cisplatin, Methotrexate and Vinblastine which is standard for bladder cancer in the UK.Its not too bad meds reduce the nausea although I do feel very queasy the evening I have treatment and have underlying nausea most of the time.My hair has gone and I feel tired very easily .Other than the hairloss its very similar to how you feel for the first few months of pregnancy if that gives you an idea.If your doctor recommends chemotherapy please dont be frightened of it they really do try and make it as comfortable as possable.I had a central line as my veins are useless and I would recomend that it saves a lot of hassle.If I can help at all please get in touch.I try to maintain a healthy diet get a little excercise every day and drink gallons of water all which seem to help.
Lots of love and good wishes clur xxxxxxxxxxxxx

Hi Nanaca,

You wrote:
"I would be in excellent condition except that I cannot sleep due to extreme pain in my left leg. I have no idea what caused it since I never had it before. Has anyone suffered from this after an operation and what did you do for it."

This sounds familiar, I've heard people complain post-op of severe leg pain that turned out to be neuropathy (literally: nerve damage). It takes time but usually goes away. One woman I know ended up with a permanent limp but is still alive and well 7 yrs post-bladder removal and that's what counts most.

It seems that sometimes the position a person lies in on the operating table causes this problem.

Of course, I'm not a doctor and also not able to diagnose something like this over a message board! Hopefully the doctors at Sloane will have more info. You should have it checked out no matter what because it could also be caused by a blood clot and that is can be very serious!

>" I assume the options will be to start chemo in December or monitor the area with a cat scan every three months. I believe we will opt for the later. Any suggestions ?"<

That would depend on the what the pathology report says, I should think. The people at Sloan will give you their advice, but I suspect they will recommend chemo because of the evidence of cancer outside of the bladder (where, exactly, I'd like to know).
All the best,
Wendy

I just turned 48 years old. I had my cystectomy one year ago this month. I wish I had found this site before my surgery, as I had no women to discuss this with. Because of my age and being so active, my Dr. strongly recommended the Indiana pouch for me. I was very hesitant and did much online research. At the last minute, I did go with the internal pouch and I'm very happy with it. During the recovery, I had to use the external bag for a few weeks. I had reactions to the adhesive and other minor problems. Mostly, just being uncomfortable with it. My Dr also stated that as far as UTI's, the Indiana pouch had the least problems because there is no backup into the kidneys. At any rate, I still find it comforting that if you have the internal pouch, it can be reversed to the external if you decide later that it's not for you or if you have problems. However, the external bag cannot be reversed. As far as recovery, I had a hard time. There were no major problems, but it was painful. My advise to anyone facing this is to discuss pain management with the Dr before hand, as I was advised to do. That's something you'll be facing. It's not unbearable and I don't want to scare anyone, but it is part of the recovery. During the past year, I went through many changes both physically and emotionally, but things are leveling off now and I'm adapting well. If I can help anyone through this in any way, feel free to email me. I know what it's like.

Best wishes to the ones above going through this ordeal and my God be with you and your family. Family is so vital to a full recovery.