Muscle invasive T2, prepping for neoadjuvant chemo, RC and complete hysterectomy

[JanetRose]

Hi all,

I’m brand new here and would love to talk to others who have had a similar experience. I was diagnosed with a tumor in January and had it scraped. Pathology and CT scan revealed muscle invasive T2 bladder cancer with prominent lymph nodes. I will begin chemo in the next few weeks I guess (appointment with oncologist, radiologist and a new urologist Friday). The plan is to shrink the tumor and any other cancer involvement over about 3 months, then undergo RT, complete hysterectomy and lymph node removal – then urostomy system of some sort. I’m unsure what to expect with any of this and appreciate any advice very much!

Janet

 

 

[Donald123]

Wishing you all the best Janet.  I had a muscle invasive T2 bladder cancer diagnosis 1.5 years ago and had my bladder and prostrate removed.  There was no evidence of cancer spread to any lymph nodes though.  Surgery and recovery both went well, and am still adjusting to my neo-bladder.

Take care, Don

 

 

[marysue]

Hi JanetRose:

I didn’t have to go down the road that you are embarking on but would just like to wish you the best for your upcoming treatments and surgery.

If you haven’t thought of it yet, I suggest considering keeping a medical journal.  Lots of us do and find it a good way to keep track of appointments, questions/answers from appointments and even just jotting down a few thoughts about feelings.  I did this when doing BCG treatments and found it a helpful reference for remembering later.

The RC surgery with a hysterectomy is a big one.  I don’t know how old you are but if you are pre-menopause you may experience surgical menopause post surgery.  If this will be the case I suggest speaking to your urologist about whether you should see a OB/GYN about potentially needing some kind of hormone replacement therapy.

As for what to expect during chemo and/or surgery, I suggest contacting BCC in Toronto and ask to be connected with a female support volunteer that has had the surgery of whichever option you will be having.  You didn’t mention whether you were given a choice by your doctor.  Some people are able to choose between options.  Others not because of their situation. As you may have found out, the two usual urinary options are the outside pouch with a stoma (exit created so the urine can lead the body) and the internal neobladder created from a section of small intestines.  Some people are offered what is called an Indiana Pouch which is sort of a combination of the two.  You have an internal reservoir to collect the urine and then use a catheter thorough a stoma to drain the urine out.  All options have pros and cons.  It takes a conversation or two with those that have had the different surgeries to get a sense of what life may be like post op.

All the best.  (((HUGS)))

[Nightingale]

Hello JanetRose,

I am a moderator with Bladder Cancer Canada and if you’re agreeable, I can check if we have a Peer Support Volunteer who has gone through what you’re going through to set up a date and time for you to talk with.  You can reply in here by simply indicating your interest.

My best,

[JanetRose]

Definitely interested in any input regarding all the procedures I have to deal with.  Thanks for contacting me and looking forward to more information.

[Nightingale]

Hi JanetRose,

We have found a couple of Peer Support Volunteers to talk with.  Private message me your phone number so I can arrange for them to contact you.

 

Thank you,

 

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