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- This topic has 39 replies, 11 voices, and was last updated 10 years, 11 months ago by
Jack Moon.
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September 10, 2012 at 2:22 am #8660
babyd
ParticipantHello my name is Louise
My husband has recently been diagnoised with bladder cancer. He is 49 years old. He has had two surgeries to remove tumors from the bladder. His first surgery we were told he had large multiple tumors. On his next 3 month check up he again had tumours which had to be removed. I have been reading regarding grade etc. We were not told any of this information. His surgeon told us that it is common for the tumors to return and not to worry. When we asked about treatment he told us that we would discuss it at his next check up which is in October. I am frustrated as I don’t know I am happy with them returning on the very next check up. I have been doing a lot of research online but there is just so much. His surgeon has told us not to worry but how can you not. I see the next time we have an appointment I would like to know the grade etc. I am just not sure where to go from here. The word cancer is a scary one. If anyone has any advice on what we should be asking and are not I would appreciate your feed back. His family doctor feels he should of had treatment. I am wondering if we should be getting a second opinion. Thanks LouiseSeptember 10, 2012 at 4:10 am #13760Jack Moon
KeymasterHi Louise
Sorry your husband has been diagnosed with bladder cancer. I would recommend you ask your current Urologist for a copy of your husband’s pathology reports. These reports will indicate the stage and grade of the tumors that were removed. Treatment for bladder cancer depends on both stage and grade. We can assist you in understanding the reports.
Yes bladder cancer does have a high recurrence rate. I have had 2 recurrences myself during the first 2 years of being diagnosed, but have been all clear coming on 5 years.
If you are interested in obtaining a 2nd opinion, I would recommend this be done at a major cancer centre or teaching hospital and again we can assist you with the procedures necessary to get this accomplished which are quite easy.
You and your husband are no longer alone in coping with this disease. You are now part of a very large family of peers who have much experience and knowledge of bladder cancer.
All the best,
JackSeptember 10, 2012 at 6:26 pm #13761babyd
ParticipantThank you. I am going to get that information. I think my husband is in a bit of denial as he feels he will be fine and not to worry. I do worry how can you not. When I receive the report I will post the information. Louise
September 10, 2012 at 7:23 pm #13762Greg
ParticipantHi Louise.
Do get the path report as Jack, our President, has mentioned. That will have key information to determine the appropriateness of the treatment. Unfortunately, some doctors do not seem to understand the impact a diagnosis of bladder cancer can have on the patient and on his loved ones. Also, unfortunately, some doctors may not be up to speed with current treatment procedures. Your doc may be the best there is, so I am not implying he is somehow deficient at all. But the path report will help you understand what is going on as well.
Sometimes denial is how we cope best. But never let the suspected denial keep him from his appointments with his urologist. That’s a really bad error. He may also have a really great outlook on life in general and this is simply one more hurdle to overcome. Here’s to that kind of attitude! Either way, you’ll both need to be diligent in keeping on top of this as it appears you are. Well done. Keep us in the loop. We’re here for support.
GregSeptember 10, 2012 at 10:22 pm #13763marysue
ParticipantHi Louise! Sorry to learn of your hubby’s diagnosis. I agree with all that has been said and I also say don’t hesitate to contact Jack for any info for report interpretation or second opinions. You and your hubby have the right to know where exactly everything stands. If your surgeon doesn’t cooperate with that then find someone else. If the tumours are high grade then some form of further treatment should be discussed. YOu also need to know for sure if the tumours are invasive or not. That is not something to take lightly. Keep us in the loop. All the best.
September 11, 2012 at 3:09 am #13764scubalady
Participantwelcome and sorry you are going through this. But there are a lot of us here with you. I too would be uncomfortable with a doctor that is not sharing info. he might be doing everything right but you need to be treated like thinking adults. Maybe you need to sit the doctor down and lay out your expectations for communication and information. If that works, good. if not…
keep us posted and best wishes…
JackieSeptember 11, 2012 at 2:59 pm #13765marysue
ParticipantI forgot to mention that I had that trouble with my first uro. Even though he is a competent surgeon he never answered questions to my liking. I always had the feeling he was holding something back. He got defensive if you questioned too much. I changed docs and am much happier.
September 12, 2012 at 6:21 pm #13766babyd
ParticipantThank you everyone for the support. My husband and myself have learned more from this site than his own doctors. I have got a copy of both reports now so hopefully Jack can help me. I have emailed them to him. We were also wondering my husband experiences alot of fatigue. Is this common with bladder cancer? His doctor has done some more testing of blood checking for anemia and thyroid etc. Louise
September 12, 2012 at 8:14 pm #13767scubalady
ParticipantFatigue can happen after surgeries, as some of us take a while to get over the aneasthesia. but I’m thinkin that’s just a few days or a week for tumor removal (longer for a major surgery like bladder out). Getting a cancer diagnosis can result in or aggravate depression, which can cause fatigue. I know Craig’s regular doc put him on anti depressants after he was diagnosed (case of depression got worse). I can’t tell you how much that helped!!!
But beyond that, if his cancer is non-invasive i don’t believe it should be directly leading to fatigue… (unless he was losing a lot of blood, resulting in being low on iron).
Sounds like the doc is doing the right things, but do think about the impact of a cancer diagnosis on his head. everyone responds differently, but everyone responds somehow.
Take care,
JackieSeptember 17, 2012 at 12:02 pm #13768stumblegirl14
ParticipantLouise I’m late in posting but certainly wanted to welcome you to the site. Sorry to hear about your hubby being diagnosed with bladder cancer. Hopefully now that you have the pathology report you’ll have more understanding and able to make informed decisions as you both go forward. Strictly my thought but regarding the tiredness quite a few of us have been diagnosed with very low vitamin d levels prior to bladder cancer diagnosis & every year since then so perhaps you should try to get that checked for him also. I don’t really understand the connection of low vitamin d & bladder cancer but getting higher doses of vitamin d have certainly helped me with the tiredness & my doc checks every 6 months to make sure they don’t drop off. Good luck going forward.
FloSeptember 23, 2012 at 2:47 pm #13769KIOWA
ParticipantI had my first BC when I was 44. A large single tumor. But my uro surgeon had it biopsied and gave me the results and explained them to me. He never said “don’t worry”. that was a stuped thing for a doctor to tell a patient. My veterinarian doesn’t even make comments like that. My doc insisted on quarterly cystoscopies, then in two years every 6 months and then once a year forever. Good thing too because more BC arrive 18 years later. good thing I had those annual cystos. that is how they were found. Your doc has a responsibility and obligation to fully inform you and your husband about this. Please get all the records. I would suggest a second opinion on the biopsy.
Kiowa
September 24, 2012 at 12:34 pm #13770babyd
ParticipantI would like to thank everyone for the comments and advice. We are getting a second opinion. My husband has an appointment on Thursday in Toronto with a specialist. His family doc feels the second opinion is what we need. Jack was helpful to us and we now at least understand the results. I am so glad I found this site. Everyone has been supportive and thank you. There is so much helpful information on here as well. I will let everyone know what this specialist has to stay. He is up to date on all treatments and does specialize in cancer of the bladder. Louise
September 24, 2012 at 1:28 pm #13771Zina
ParticipantHi Louise. I am so glad to hear that you will be getting a second opinion. At this stage of the game, knowledge is power. Its good to see you are gathering as much information as you can. I found it helpful to keep a notebook and write down all my questions. That way when I went into speak with the doctor, I wouldn’t forget to ask something important. I also wrote down his answers, because sometimes it was hard to keep all the facts straight. Good Luck on Thursday.
September 24, 2012 at 1:45 pm #13772Brian
Participantit is always never good to hear the c word & everyone on this site supports each other to the nth degree so you do have people here that can help & walk you through things. do not be afraid to ask any questions no matter how embarassing it may seem to you or your husband. you can always type in the forum search a topic & you will get a lot of postings in that query. please do take advantage of that. if your husband is going to have bcg treatments please take vitamin d as it will help in the effectiveness of the bcg treatment. may i also suggest to get his vitamin d level checked through your g p. their is charge to it unless your doctor (g p) ticks it off on the lab form. i myself was diagnosed with bc in nov 2010 & since april of 2011 have been cancer free 1 chemo mitomycn c & 6 bcg treatments, 3 operations & many cystos. keep a positive attitude & we all want to support every bladder cancer patient and caregiver as much as we can. take care brian
September 24, 2012 at 7:05 pm #13773Val
ParticipantWelcome to the site. I find that women are generally more proactive than men regarding health so it might be your job to keep on him. I know my hubby often goes to “don’t worry” when I think he should do more.
I highly, highly recommend a second opinion. Because I switched uros I saved my bladder. My first urologist wanted to remove my bladder, the second said I could keep it. It is now 2.5 years later without reoccurrences !!!!!!!!
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