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Women and Neobladder

11 years 11 months ago #10266 by Maria
Thanks Melodie, I am feeling a little better today, I hope that continues. I have the docs appointment tomorrow and am preparing my mind for the next step on my journey.

Yes, I live in Florida. I feel very fortunate to be in the US at this time. The National Health System in the UK is in one great big mess. I dread to think how long I would have waited for anything across the pond. The hospitals have gained a reputation over the years as being dirty and rife with MRSA. It just seems a great system that was, has been is entrenched in a crisis for so long now, it needs one huge overhaul to recover and modernize!

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11 years 11 months ago #10223 by Melodie
Maria,

You say your mind is a mess...I'm sorry,I was thinking you were in the UK but as I recall, you are from the UK but living in Florida...anyway, all of us are here waiting to help you move forward...for now, just try to take one day at a time so you won't feel so overwhelmed. Peace be with you. Melodie

Melodie, Indy Pouch, U.W.Medical Center, Seattle, Dr. Paul H. Lange & Jonathan L. Wright

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11 years 11 months ago #10143 by wendy

Wendy: I have not had a hysterectomy. I had a cyst on my fallopian tube 18 years ago; it was thought to be an ectopic pregnancy so that is why I had a laparatomy. I was told I would not be able to have children…………………4 months later I was pregnant with my son and had a C Section.
I had an early menopause, came off the HRT 2 years ago after all the scares.
Just had a gyn. check and I am pleased to say my pap smear was normal.


Well, good, then there is less risk of anything causing a potential problem. My sympathies about the early menopause, that was my treatment for breast cancer in Jan.2000, I was 43. It's tough!

I hope I am making sense, the research is confusing me. I am not doing to good, I will know a bit more when I get my CT scan results on Tuesday, and I am really scared to go to that appointment. My mind is working overtime, like what if the cancer has spread, I am sure you have all been there.

I was out Christmas shopping yesterday and just burst into tears in the store, this is so stressful. I just seem to cry for nothing and then pull myself together. Today I did not get out of bed until 11.45am; I am emotionally raw and exhausted.

Thank you for your support I am sure to have so many more questions.


Who wouldn't be emotionally exhausted? A cancer diagnosis puts a new slant to things, and the first part of the journey is the worst...once you have been staged and a treatment plan is in place, it's much easier to focus on the step by step nature of things...

Keep us posted on what you decide on re: your surgical options. As everyone will say- the surgeon should be experienced on doing it with women, neobladders are relatively new in this setting and it's best to have an experienced person at the helm.

Take care,
Wendy

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11 years 11 months ago #10139 by Patricia
Maria...my mother had 3 more kids with one fallopian tube and ovary..surprise! And of course they had to be boys. I was just fine being the only spoiled girl.
Well welcome to the "we've all been there" club. Everything you're feeling is normal and all the information out there is overwhelming. I remember when i was first diagnosed and i was no stranger to medical terminology but i'm looking at all these sites and statistics and gradings and stagings and wasn't sure what did or did not apply to me and i was completely overwhelmed. I would just start erasing it all in my head and pretend it really wasn't happening. I was in a great state of denial..i had no pain so therefore i couldn't possibly have this cancer. I somehow found this site and i believe it was after talking with Dr. Schoenberg who told me to check it out...he's very supportive and is equally supportive of other great surgeons out there who are making headway with bladder cancer. He had no problem giving me a list of whom he considered to be the best. Anyway i found my way to a major cancer center and a top surgeon who probably saved my life...thats a long story...and then i found Wendy and this site...there was no forum at the time but she put me in contact with some wonderful mentors including herself that guided me every tenuous step of the way even when i was taking two steps backwards...actually running to be honest...they kept me on track. You're going to a great center and hopefully we'll be here to answer anything that may be on your mind. Once you get the plan in gear carefully study the diversions and don't be afraid to ask questions...like my doctor once said..There are no dumb questions.
So i wish you well and know we've all been where you are right now..even the guys.
Pat

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11 years 11 months ago #10133 by Maria
Thank you for your replies.

Wendy: I have not had a hysterectomy. I had a cyst on my fallopian tube 18 years ago; it was thought to be an ectopic pregnancy so that is why I had a laparatomy. I was told I would not be able to have children…………………4 months later I was pregnant with my son and had a C Section.
I had an early menopause, came off the HRT 2 years ago after all the scares.
Just had a gyn. check and I am pleased to say my pap smear was normal.

Pat: I had 2 laparospic surgeries for diagnostic purposes.
I have just started doing my own research and started a list of questions so I am ready when I meet with the surgeon. I am leaning towards the neobladder. Thanks for the advice, it would not have occurred to me to check out the surgeon’s experience. I am learning slowly but surely.

Holly: Thanks, a good surgeon should anticipate any problems. Sounds like you have been through it, how are you now?

I checked out the NCCN website and found the information very helpful. The Cancer Center I am referred to is listed on the site, it seems to have an excellent reputation.

I hope I am making sense, the research is confusing me. I am not doing to good, I will know a bit more when I get my CT scan results on Tuesday, and I am really scared to go to that appointment. My mind is working overtime, like what if the cancer has spread, I am sure you have all been there.

I was out Christmas shopping yesterday and just burst into tears in the store, this is so stressful. I just seem to cry for nothing and then pull myself together. Today I did not get out of bed until 11.45am; I am emotionally raw and exhausted.

Thank you for your support I am sure to have so many more questions.

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11 years 11 months ago #10039 by mznoregrets
Hi Maria,

I worried about the RC surgery also. I had a strangulating hernia back in the 80's - took out 2 feet of gangrenous intestines then and put in a mesh to fix things. Then a few years back I had a hysterectomy gone awry - needed to be opened up again after I hemorraged 1000 ml of blood, and then I got cellulitis at the surgical site which required more procedure, a drain etc. I know the Dr encountered alot of adhesions and scar during the RC - but they did it and well :)
I think a good surgeon will anticipate these things and make adjustments so all will be well - just my experience. God Bless, Holly

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