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Homepage – Forum Forums Newly Diagnosed With Bladder Cancer New to the club – What supports should I know about?

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  • #42327
    Sharon Witruk
    Participant

    I (50F) have been recently diagnosed with “Invasive high-grade urothelial carcinoma with extensive muscularis propria invasion and focal areas with features of nested variant” and I’m only minimally confident I understand what I have.  My urologist explained that I have an aggressive bladder cancer that has progressed to the muscle.  Some of the cancer cells are the kind that are fast-moving and are not always killed with chemo.

    I have already had a CT scan, cystoscopy and TURBT.  The pathology I have received are from the material removed during the TURBT.  I have another CT booked for next week and at some point a bone scan.  I also have radical cystectomy, hysterectomy, pelvic lymph node dissection and ileal conduit surgery booked for January 12th.

    It’s all moving so fast and I realize that what I have going on is quite serious (and even a little rare, being female and relatively young).  Every twinge I feel is scary.  Every ache and pain I am convinced means things have progressed even since the TURBT (November 23rd).  I have so much support of friends and family, I have good extended benefits and an excellent health care system, I have security and stability – which I take to mean I have everything I need to survive this if it’s at all possible!

    But on to my question:  I know there are people here who have lived through the same things I am and I am so hopeful to learn from everyone willing to share! I am especially interested in any tips on navigating the systems and ideas about what will make my recovery smoother.

    • How has covid impacted peoples’ treatment?
    • What should I make sure I take to hospital with me?
    • What kinds of things should I be prepared for at home after surgery?
    • When will I learn the “stage” of my cancer?
    • Do any women have insight about how to deal with instant menopause?

    I know I’m sharing a lot and asking a lot, but this forum is like a beacon in the darkness to me right now.  I’ve been existing in a virtual vacuum since my diagnosis and I am desperate for some lived experience and guidance!

    Thanks in advance to any who are able to share with me.  I so appreciate any help and support!

    #42328
    marysue
    Participant

    Hi Sharon:

    Welcome to Bladder Cancer Canada but sorry that you have need of us.  I’m Marysue or Susan as my picture is on the forum as volunteer participant.  I was also 50 when diagnosed albeit, not with muscle invasive bladder cancer.  Still, the journey was tough enough with its challenges.

    Being a muscle invasive staged patient as you already know involves a whole lot.  From what you have posted it seems like you have a really good plan already in place and ready to go.  The fact that you have people to support you, good finances and health insurance etc. as mentioned is another bonus.  I’m so glad to hear that you have those things. It makes your situation at least that one step less complicated.

    While I’m not currently in treatment other than a cysto every two years, I have heard from people that some have experienced some delays with surgeries and treatments but doctors are doing their level best to get those that really need it prioritized for surgery. I would say that you are definitely one of them given the diagnosis that you have been told.  I’m not a medically trained person but from what I read it seems like you have cancer that has progressed fairly well into the muscle wall.  What “features of the nested variant” means, I don’t know.  But given what your doctor has discovered so far, I think that is the reason for him getting you to surgery.  The initial “stage” of the cancer is Stage 2  based on your TURBT which is muscle invasive.  That may change depending on what is discovered during your radical cystectomy surgery. The surgeon will remove and check your pelvic lymph nodes for any sign of cancer.  That pathology is done right away during the surgery.  The reason for removing your reproductive organs is a safety measure since this is one of the first areas that the cancer can go to in addition to the lymph nodes. Guys usually have to part with their prostates as men tend to get bladder cancer in both areas or prostate cancer goes to the bladder. So, to answer the “stage” question – your surgeon will be able to tell you after the surgery and will also tell you whether any other follow up treatments i.e. chemo/radiation is needed.

    It is normal to be worried about every pain and twinge.  I did the same thinking that the cancer was spreading and they wouldn’t get it all etc.  In the largest majority of the cases, the twinges etc. are a stress response to our situation.  Our mental stress can manifest in physical symptoms.  Still, if there is anything unusual in terms of a specific pain it would be wise to bring it to your doctor’s attention.

    As for what to take to the hospital – here are my suggestions based on my own surgery experiences

    1) Check with the hospital ahead of time in case of restrictions of where you will be post op and/or covid protocols. This applies for those generous family and friends who want to send flowers and other get well items.

    2) Keep possessions to a bare minimum.  Your family can bring in other stuff once you are awake and getting to the point of moving around.  Some items might be; cozy sweater or shawl, house socks, slippers, a couple of good books, personal toiletries like hairbrush/comb, toothbrush/toothpaste, deodorant, shampoo/conditioner, lip balm, skin moisturizer, eye drops if you use them.  Avoid bringing in valuables like jewelry, money.  Keep ID to a minimum that is required by hospital.  You will be pretty tired and woozy for a few days and will probably sleep off and on so having a big bunch of stuff around is not going to help anyhow.

    3) Check with the hospital about their rules around the use of technology i.e. cell phone, laptop.  You won’t want those things around in the first while after surgery because as mentioned you will be sleeping a lot post op and you don’t want the risk of them being stolen.

    4) Ask about whether you should bring your own stash/supply of masks and personal hygiene products.  You will need sanitary pads for a while after the hysterectomy.  The hospital may supply the pads but those might be the standard issue and not as comfortable as your favourite brand.

    5) Be prepared to wake up with a lot of things attached to you.  There will be various surgical tubes in different locations in your abdomen and maybe elsewhere, one or more IV poles with various meds.  You may have an abdominal urinary pouch or they may attach the tubing to a floor bag.  Fellow IC patients on this site can tell you more about this part. You may have a pain pump which is a wonderful device that lets you give yourself minute doses of morphine.  It is set so that you can’t overdose accidentally.  You may be on oxygen.  You may have leg pumps – bags on your legs pumping to circulate the blood in your legs to prevent blood clots. I had this post hysterectomy surgery in 2002.

     

    For at home post op:

    1) Prepare some light foods ahead of time i.e. soups, stock up on eggs for scrambling. etc.  You probably won’t feel like eating a full diet for a while.  The hospital will give you instructions post op as to how to proceed with reintroducing foods into your diet. Otherwise enlist family to help out with the cooking.

    2) Have some laxatives on hand in case you need help to get things moving post op.  General anesthesia and surgery that involves cutting into the intestines can sometimes cause temporary motility issues with the large and small colon. Drinking a lot of water post op helps prevent constipation and will keep your urine diluted and help reduce the amount of post op mucus as well.

    3) Sanitary pads – you may or may not need them for a couple of weeks after surgery.  You probably won’t bleed a lot but some discharge will happen if they are also removing the cervix.

    4) Ask about what kind of IC supplies you will need to buy ahead of time or does the hospital send you home with some.  Since you are having the ileal conduit diversion that will mean stocking up on pouches, and the other parts.  Fellow IC patients on this site can help with this as will the ostomy nurses at the hospital.  They will show you how to change the bag and other parts out before you leave.

    5) As for the “instant” menopause – ask your surgeon about if a consult with an OB/GYN is required to figure out whether you will need supplementary hormone therapy or not.  When I had my hysterectomy surgery in 2002, I was able to keep my ovaries but even then I experienced menopause like symptoms of extreme night sweats for several weeks because of the shock of the surgery.  The one thing I will say about a hysterectomy is that it will affect your hormones and a few days after surgery you may feel very weepy and cry a lot.  That will pass but it may be a lot on top of the RC surgery.

    6) Once home – don’t attempt too much too fast.  Focus on you.  As someone who has had several surgeries I learned the hard way post op – the key is rest, exercise as prescribed as able and delegate housework, shopping and other tasks to family and friends.  You will be tired for quite a while but it does get better.

    7) You may or may not require a nurse coming to your home for the first while to check on how you are managing with changing the pouch, how your incision is healing etc.  I don’t know if this service has been affected by covid or not.  It would be prudent to ask.

    8) If you are on any prescription meds for other health conditions make sure that you ask about what to stop/ reduce or when to resume post op.  Same goes for any vitamins or natural health supplements if you are using any of those.

     

    I’ve loaded you up with a lot of stuff and apologize if it is a bit overwhelming.  I also highly recommend that you call Bladder Cancer Canada’s toll free number and leave a message to be connected with a female peer support person who has had the same surgery.  She would be able to answer post surgery questions much better than I can and give you the low down on what life is like post RC.  All the best for a successful surgery and speedy recovery.  ((((HUGS)))

    #42332
    Sharon Witruk
    Participant

    Marysue, you have made my day! Thank you so very much! I was planning to reach out for some peer support as I’d seen that recommendation made on others’ posts. I would find that invaluable! I also am so grateful for all the info you’ve so thoughtfully provided. You’ve put my mind at ease about a lot of the things I was worrying about.

    Best,

    Sharon

    #42335
    Stever
    Keymaster

    Sharon,

    I had a radical cystectomy in April of 2019, pre Covid thankfully. Please call Bladder Cancer and ask to be put in touch with a female that has has this surgery. They will be able to add to what Martsue has told you. Do you know if you will have an illeal conduit or neo bladder as volunteers with either surgery should be available to talk with you.

    I did have treatment in the hospital for lymphoma during Covid and I had no problem with getting the treatments but could not have anybody in with me. Check with your hospital to see if family will be allowed in after surgery.

    As Matylou said, after surgery, you won’t feel like doing much. I was kept in the hospital until I had a BM, about 7 days, and then sent home. Low appetite, constipation, feeling run down, etc, as Marylou outlined earlier. You will gradually overcome all of these and be able to do the same things you do now.

    I see that your surgeon if being very proactive in getting you into surgery quite quickly so that is a good thing.

    Good luck with your surgery and hopefully a quick recovery.

     

     

    #42338
    Sharon Witruk
    Participant

    Thanks so much! I left a message with BCC yesterday, so I’m sure I’ll hear from someone soon. I’m looking. Forward to having an experienced buddy throughout the process.

    #42341
    Nightingale
    Keymaster

    Hi Sharon,

    So good to see you in the Forum, and I’m glad to see you have received very good information from Marysue and Stever.  You should have received an email from me regarding the Support Group coming up on Thursday Jan 27th.  I hope you can join and participate.  All the best with your surgeries and please let us know if there is anything else you need.

    My best,

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