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Hi. My husband was recently diagnosed with bladder cancer which has invaded the muscle and he will need to have his bladder removed. We don’t know much yet, after the cystoscopy and the biopsy procedures. We will get results and more info at his March 6 appointment with a different surgeon. I am here to learn as much as I can, and I guess, to try to find some hope in this very dark and scary time for us. We live in SW ON, are in our mid-40s, married 5 years this May, no children…and totally unprepared for this, we thought his emergency room trip-follow up appointment was to confirm kidney stones. Thank you for this site, for the helpful info. I suspect I will be a frequent visitor in the next several months.
Terrified, saddened, but trying to cling to a vision of a hopeful future,
TnT (our first names both start with T, and we are ‘dynamite’ together)Hi TnT
So sorry your husband has been diagnosed with invasive bladder cancer. We have many members who have experienced what your husband is about to experience. They can assist him and hopefully answer your and his questions.
If your husband would like to speak to a bladder cancer survivor who has experienced removal of their bladder, we can arrange for him. We have male members who have different bladder diversions and each can speak of their experiences with their own particular situation. They can share both the pre and post surgery experience they have encountered.
We also have many caregivers that can speak to you regarding their experiences in supporting and caring for their loved one. All you need to do is send me a private message and I will make the arrangements for you both.
Hopefully many will chime in here on the discussion forum and support you both throughout this journey.
All the best,
JackHello TnT:
Just over two years ago I had my bladder removed and a neobladder constructed due to muscle invasive bladder cancer. I did not have chemo prior to surgery as my cancer needed to come out urgently. I understand the sadness and fear but can assure you that once the recovery from surgery gets you to your new normal life can be wonderful – different, but wonderful. Different in the expected physical sense (I can give more details about that if you wish), but also in a renewed appreciation for some of the things that might have been taken for granted BC – that is, before cancer! You live in a city with exceptional bladder cancer doctors and I hope you are being treated by them at a major cancer centre. I assume you are.
You have arrived at a website that is a godsend for many, myself included. Caring, knowledgeable, supportive people come here often and share what they have to offer – even humour when appropriate and quite often when not, but it makes us laugh anyway and that is good medicine for the weary soul.
Cling to that vision of a hopeful future. I’ve been where you are and where you are going and am living in the joy of not only being alive, but truly living. And there are a bunch of us here. Be encouraged. Some challenges ahead, of course, but we’ll walk through them with you and celebrate down the road.
Keep in touch.
GregHello TnT! So sorry we have to meet this way, but glad that you are here so we can help you. I was diagnosed 2 years ago with high grade muscle invasive bladder cancer. I am female and I have the indiana pouch diversion. Luckily, like you, I live in a city where the uro-oncologists are top notch. I can not say enough about the thorough and compassionate care I received. If you want to send me a private message to ask me any questions, please do so. I know this is an incredibly painful time for you and your husband. Take comfort in knowing that there are many on this site who will listen to you and provide you with information on our experiences. You don’t have to go through this alone. When I was told I had cancer, I thought my life was over. Now, two years later, life is still pretty great. Different, yes, but still great. Good luck on the 6th. Please keep us posted.
Hi TnT,
My husband Mike and I faced a very similar situation to yours a little over a year ago. We thought he had a bladder infection and it turned out to be highly aggressive bladder cancer and he had to have his bladder, prostate and lymphnodes removed. Like you, we were scared, overwhelmed and just generally freaked out. Everything went very quickly.
As Mike’s wife and chief caregiver, this website was my safe place while Mike was recovering. Everyone here was fantastic and answered all my questions (and there were many). It’s nice to be able to talk to people who truly know what you are going through. There is a lot to learn about bladder cancer and there will be ups and downs but we are proof that having your bladder removed is a doable thing. It is exactly one year today since Mike’s surgery and his neobladder works quite nicely.
We wish you the best for your March 6 appointment and know that if you need to talk, there is always someone here to listen.
Monique
(like you, we are M&M…we melt in your mouth..not in your hands )Hi TnT,
My husband was diagnosed with muscle invasive bladder cancer in April 2011. Until that moment, he was in perfect health. We were is a state of shock and this site, with its many wonderful people providing us with information and support, got us through that time.
Come to this site often and frequently…there will always be someone ready to respond.
IevaHi again and thank you for your replies and emails. I can tell this site and its members are going to be a great support and resource for us. My husband, the ‘Tim’ in TnT, is doing ok for now, some pain and discomfort but mostly it’s about dealing with the emotions, the unknown and the fear. We are just trying to get through the days till Wednesday, when we get more information. I am going to try to assemble a list of questions to ask the surgeon. I am told the appointment is only 15 mins, which is not a lot of time to get info on such life changing news and decisions. I will ask for the scans and path results, thanks for that advice. I have a question though about asking for a second opinion, which I have seen is something that is suggested: I think, based on what we have been told, that we are at a good hospital for this (all our city’s hospitals send this stuff to the same single hospital) and that we have good doctors – the first was the head of the department and the surgeon we are seeing is the second highest. I am inclined, therefore, to accept what they tell us and not seek another opinion, also because I worry that will signal we are difficult and result in less urgent, or considerate, service. Also, I don’t think we can stand the delay it may cause…knowing this is inside him makes Tim very restive and eager to ‘get at it’ rather than constantly waiting and thinking about it, plus, it gives it more time to grow and invade. But! what if getting a second opinion means he could somehow keep his bladder and we made a horrible mistake taking everything at face value?
We have other worries, of course. What if it has spread beyond the muscle wall into other organs? How will they know that unless they CT his whole body? What about pain management? Tim has been clean and sober in recovery for over 14 years – he counsels guys in recovery and has received many awards for his volunteerism and ‘giving back’ service (can you tell how proud I am of this guy? 🙂 I love him so much!) He is not too worried about it, but I am a bit. I suppose it goes without saying (tho it feels a bit ridiculous to post this) that we are both worried about the effect on intimacy – we are still kind of in the honeymoon stage! Tim is worried that having his prostate removed will effect him ‘chemically’ – ie put him in a depression, but I don’t think I have read that anywhere. We are both quite worried about finances and how much time off he will need. Tim was laid off from his job in 2011 and needed almost a year to find another position, depleting his EI (there are not a lot of maintenance supervisor jobs in our area, lots of competition from laid off steel workers). We were so grateful when he found a job last October at a great place, but he does not have enough sick time accrued to cover this and has no benefits or STD. He is worried they will give his job away, and I am worried about making rent! I work full time as well and can’t afford to be off much, how will he care for himself after surgery when I am away during the day? I am also worried about his hospital stay – how will will be able to stand being in there so long? He could barely handle 2 days for the procedure. I am reluctant to type this part, but it has to be said, Tim is a smoker…we know, we know. 🙁 It’s a moot point now..though he also worked in silk screening and paints all his life, but really, the cause is no longer the issue. He quit cold turkey upon diagnosis, lasted 48 hours and almost lost it (after 30 years of it, understandable). The doctor and pharmacist both said why are you doing that now?! Get through this first, then quit and with support and a program, so that is what we are doing and I have an appointment with a cessation specialist to figure it out – we are committed to it, with obviously the best motivation. That being said, I worry he will lose it in the hospital, going that long without smoking, and maybe do damage to his tubes or something. He is a big, strong, street-wise, inner teddy bear type, and I worry how different he will be after this process, losing so much weight and muscle and condition, will he still be able to look heroin addicts in the eye and tell them to “sit down, stop talking, start listening!” ? or not flinch when an addict in withdrawal pulls a knife on him? Will he still be the same person? Oh – I am just a bundle of worry, aren’t I? 🙂 I only meant to log on to say thanks, and look, I spewed paragraphs of paranoia and fear at you all – my apologies. I will get a grip soon, but actually it did feel therapeutic to name the fears. My family is loving and supportive and we have a wonderful church family too, standing with us…and if love has impact, there is tons of it…I promised before God to stand with him in sickness and health and I will do whatever he needs…just hoping I can keep my own weaknesses under control when he needs me to be strong. I could hardly stand seeing him in so much pain at the hospital during the bladder spasms. I lost my dad to non-hodgkins lymphoma when I was in my early 20s, I think echoes of watching dad suffer influence how I handle Tim’s situation.
Thanks for ‘listening’ — sorry it was so prolific!
TeresaHi Theresa!
Welcome to our site but sorry that you have reason to be here.
I’ve not had to have my bladder removed but do understand some of your worry. As for the finances your hubby should still qualify for EI as it would be sick leave EI not unemployment EI. They count it differently. He will need a doctor’s note. It won’t be much but every dollar counts. If your income is low enough you may qualify for some form of govt assistance. The hospital social worker may be able to help here. If you owe on credit cards talk to the creditors or a debt counselling agency to see if they can come up with a better repayment plan to help while he is off work. Talking to creditors ahead of time goes a long way to preserving your credit when they realize that you are not skipping out on them.
As for the coping with not smoking they can give him the patch or some meds to control the cravings while he is in the hospital. Back in 2002 when I had an emergency hysterectomy my roommate was a smoker in for the same surgery and that is what they did for her. I suggest ask the doc about it ahead of time. And definitely do the quit smoking thing after the surgery is over.
Lastly don’t forget to take time for yourself. The hospital can arrange for any in home care once he is discharged so that will limit the time you need to take off work. I suggest to see if your employer has any compassionate leave as part of their benefits. My hubby was able to do that at his last job and was able to take those days off with pay to take me for my immunotherapy treatments. If you have good church support see if there are volunteers that can help with meals, cleaning etc. so that will free you up to get out on your own for a bit to do something just for you. Your hubby has a big surgery and lengthy recovery ahead of him.
As for the “intimate” side of things have Jack link you up with a male survivor who can go into that with you guys. The type of diversion he chooses will depend on a lot of things. Again survivors on this site would be able to help mention the pros and cons as well as the doc of course.
I also suggest keeping a journal since you mentioned that you feel a lot better letting it out. Don’t worry you can vent here all you want too. We’ve all been there and understand the fears and frustrations. As you’ve said you’ve had a lot to learn and do in a very short period of time.
If the cancer is muscle invasive the gold standard is still to remove the bladder. If he does choose to do this surgery they will remove the lymph nodes in that area and biopsy them for cancer. If they are negative that means the cancer is contained to the bladder, if they are positive then that obviously is a different case. This is something I suggest you bring up at the next appointment so you can sound the doc out on what his approach would be for either scenario.
Best of luck and keep us informed. You’re not the only one who gets wordy! Take care.
Hello all. Just a quick note as I said I would post Tim’s results. We saw Dr. Shayegan. Not what we expected. Tim has a rare small cell bladder carcinoma. He will be having scans done of brain, bone, liver, lungs. We will be given appointment at local cancer centre and he will start heavy chemo soon. That is all we know. We are heartbroken, grief stricken and in shock. I am terrified and fighting off panic attacks. I think a little hope would help us calm down – we did not get any at the appointment. I know this now goes beyond what this site and forum are designed to address, but if anyone has any hopeful or inspirational stories they know of someone they may know who has this -unlikely I know, as the doctor said it is like a 3% type — I would greatly appreciate it.I am too afraid to research this on the internet right now. Dr. Shayegan said something about a 50% survival rate and I don’t even know what that means. My two pages of questions about neobladders stayed in my purse as they are not even considering surgery now. Wish this update was different. Appreciated your posts.
Sorry to learn of the not so great prognosis. I think just taking a breather right now is probably the best way to cope with the shock. I suggest if you can plan a small getaway before he begins chemo or whatever else he needs. I did that before my first surgery and it helped to have time to think of other things. God bless, you’re in my prayers.
Below is results of a study done by MD Anderson in Houston.
Chemo prior to RC had a 78% survival rate at 5 years.
So I know the news was not what you had expected, do not give up hope. You have one of the top bladder cancer specialist in the country, you are at a top cancer center.Neoadjuvant chemotherapy
Neoadjuvant CT before surgery in surgically resectable SCCB has been investigated in several retrospective studies and in one phase II prospective study [12,33]. In addition primary CT was used in sequence with radiation to increase the efficacy of RT [4,10,15,32].Neoadjuvant CT in bladder SCC cancer has four theoretical advantages [36,37]:
*the early treatment of micrometastatic disease,
*the systemic treatment is better tolerated by allowing the preoperative administration of CT drugs in optimal doses with less toxicity,
*SCCB is highly chemosensitive disease; the vast majority of patients have great responses,
*downstaging, which facilitates the surgical techniques.
One retrospective cohort study and one phase II clinical trial demonstrated the advantage of CT in neoadjuvant setting.
In the MD Anderson retrospective study, 46 operable patients were included; the first group of patient (n = 21) was treated with 4 cycles of neoadjuvant sequential CT regimen based on ifosfamide plus doxorubicin at day 1 repeated every 42 days and etoposide plus cisplatin at day 21 repeated every 42 days; the second group was treated with surgery alone (n = 25). At last follow-up, 5-year survival was significantly higher in CT group: 78% versus 36% in surgery alone group.
Based on these data, neoadjuvant CT should be considered as the treatment of choice of surgically resectable SCCB.
I joined this website today and appreciate the insights of so many people. I am in my 40’s and grateful for the incredible love from my husband. The impact on him has been significant.
I wanted to reach out and provide you with some details we found on the St. Joseph’s Healthcare Hamilton web side.
Go to the section for Patient Information under Quick Links. We read the details they have under Neobladder and Catherization.
The YouTube video of Dr. Bobby Shayegan presenting at a Patient Meeting very helpful as well: http://www.youtube.com/watch?v=gJSOMv1eLO0
I will review my research and see if there are other details that may assist you.Dawn
Hello again, all. Another quick note — I have not been active on the site since we received the diagnosis, but thank you Jack and Dawn for added insights. Tim has had a bone scan done (no results yet) and we have an appointment on Tuesday at JCC for our first consultation. We have no idea what to expect – well, not exactly true. Tim has steadfastly clung to ‘one day at a time’. I researched SCCB on the internet, which I perhaps should not have done as the information sent me into anxiety attacks and deep despondence. However, we expect to get a clear picture on Tuesday. Thanks for the emails and to Greg and Ieva for the support and information. I will re-visit when we know what we are facing. Strength to all!
Dear Teresa,
I am so sorry that the news was not better. I believe Tim has the right idea,in taking it one step at a time, but I can certainly understand your fears for your husband. You have a wonderful doctor on your side. I will keep you both in my prayers. Good luck on Tuesday.Thank you Zina – much appreciated! I have spent much of the day in tears, and am fighting off despair, but tonight I am trying hard to be strong and positive for my husband, because I sense he has yet to fully internalize how dire this is.
I expect we will get lots of information tomorrow, but one thing I am wondering if anyone has come across before — I found this while researching ‘neoadjuvant’ (I didn’t understand the word):
“Unfortunately, not everyone is suitable for therapy in this way because it can be extremely toxic. Some patients react so severely that further treatments, especially surgery, are precluded because the patient is rendered unfit for anesthetic.”This has me quite concerned…I see others on the forum asked to have the surgery right away and I am wondering if we should be exploring that instead. Also, the “extremely toxic” description has me a bit terrified about what this will do to my husband ie is the treatment worse than letting things just..
Perhaps I am leaping to conclusions and should just wait till we have the recommendation from Juravinski…but this is, naturally I suppose, consuming me.
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