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Well, it’s now three years since you all heard from me.
2025 is a year I certainly don’t want to repeat. In October 2024 I had my supposedly last mammogram. The results came back with the note that said you have a Breast Cancer recurrence. Left side this time, after37 years. Unbelievable! Twas real though. Therefore in January 2025 I had a lumpectomy followed by just a week of radiation. Joy!
Then……..in April I had to meet with my gynecologist about a serious rash I had on what I now call my undercarriage. He felt it would be a good idea to do a couple of biopsies in that area, very uncomfortable. He called me two weeks later and said we had a problem. He had made an appointment with a surgical Oncologist for the following week.
There were things that needed further investigation. Great!
Met with the surgeon and she advised that we had a serious problem that would need serious surgery as soon as it could be arranged. She then did some bloodwork and told me that she would see me again once she had the bloodwork results. Three days later she called me to come into the hospital clinic. She needed to talk to me. Could I come in the following day. Oh dear.
When I went in the following day she advised me that I had a bladder cancer recurrence and Pagets disease of the vulva. To put it simply, I had two cancers in the same area at the same time. Oh joy! What do we do now? She explained that it could mean major, major surgery. In my granddaughter’s words, I would become a Barbie doll. I don’t think you need any further information. This was scary to say the least. I said what’s next then. She told me they needed to do some more bloodwork and as this was possibly huge surgery she wanted to meet and discuss this with both a Medical Oncologist and a Radiation Oncologist to discuss any possible alternatives and she would get back to me in a few days.
She did call in a couple of days and asked me to come to the hospital again. I met with her a few days later. She had met with the other Oncologist’s and also the Pathologist. The Pathologist had given my bloodwork a thorough going over and had asked UHN lab to go over my results from 2022. Thankfully they were able to make a final determination of her original diagnosis of Paget’s and Bladder cancer.
I was not happy as you can imagine.
However the three Oncologist’s had talked it all through and felt that they would be able to manage it with Radiation and Chemo. The biggest issue was that there was no protocol as to how much of what I should receive. They contacted UHN and even Princess Margaret had no real treatment ideas. No one could help with treatment protocols. There were apparently only 12 cases of this combination of cancers reported anywhere. We all got together and it was agreed that I would receive 7 weeks of daily radiation treatment and 7 weeks of chemotherapy over the same period of time. I started treatments in July 2025 and completed both treatments on September 15 2025. It was exhausting. What was actually worse was the six weeks following the completion of the treatments. I actually felt worse after treatments were finished.
Anyway, I was advised that this would be tough and it certainly was.
I have waited to write this update until now because I wanted word from all three doctors once CT, MRI and Mammogram results were in. Thankfully I now have good news, all tests were conclusive, no signs of cancer cells were able to be found. So yippee, the doctors don’t want to see me for six months after the scans are repeated in May 2026.
Thank you for listening and hopefully this is the end. Fingers crossed.
Judy
My goodness, same group of people I spoke to three years ago. Hi all!
However, I’m back. After three years. I’m into treatments again. In April 2025 I had to see my Gynecologist as I was in a great deal of discomfort. I met with him in his hospital office and based on his examination did two punch biopsies. Once the results came back with Pagets disease of the Vulva, all buttons were pressed. I was referred to a Gynecologist Oncologist who I met with about two weeks later. She was wonderful and told me that they needed to obtain the biopsy results from Toronto General Hospital because she wanted to have their results compared to my current ones. This took three weeks. She called me and advised that the Pathologist in Toronto told her that the Paget’s disease was caused by Bladder Cancer which has metastatised. Therefore the horrendous surgery I was to have, loss of vulva, clitorectomy and vaginectomy was canceled and I have been handed over to Medical and Radiology Oncology. I meet with them next week. I am meeting with Pain Control tomorrow. It seems that it’s going to be Chemo and then Radiology.
Has anyone heard about this diagnosis?
Hi All, happy New Year!
I thought it was time to catch up. It’s almost a year since my surgery and I have finally got used to living with my pouch. Sometimes it’s a bit of a nuisance but overall other than being aware of it all the time I am managing quite nicely. I no longer have to be totally concentrating on what I am doing when I change it. It just happens.
An aside, all of you that use the one piece, precut pouch, which one do you use? Just a question but it would be nice to find out.
Anyway, back to business. Our move to Barrie ended up being a nightmare, won’t get into it but because I couldn’t do anything but watch it took a lot of time to get settled in. My daughters and granddaughters were very helpful but I have ended moving everything they unpacked over time. They were helping. However things have settled down and although we still have two cardboard boxes not unpacked we don’t need that stuff. Don’t know why we kept that stuff but it will go away in the spring.
We finally received the refunds from the four cruises that were cancelled due to COVID and are leaving on January 24th for the long awaited cruise that was not cancelled. We can’t wait. Because we don’t trust Toronto Airport right now we are driving down to Florida to pick up our cruise. It will add an extra 5 or 6 days to our vacation. I will be using an overnight pouch whilst we are driving so we won’t have to stop every 2 hours. We practiced and it seems to work. I’ll let you all know.
Thankfully I have put half of the 40 pounds I lost back on so I have not had to buy any new clothes. Just a new swimsuit. Not bad.
I would love to know how any of you have managed to travel? How many spares did you take? Do you have any ideas to make life easier whilst travelling? I would love to get some ideas.
Anyhow, I have finally caught up and I hope that you are all well and coping with this crazy life. I look forward to hearing from you all.
Judy
Hi all!
Another month has passed and I am now walking unassisted. Yesterday I am able to go to my grandson’s football game. Sitting on the stadium bench was not that comfortable but I made it through. Had to take a pain pill when I got home but the discomfort was worth it. My family is seeing me moving about unaided, their happiness is worth it to me.
We are packing up our home to move from Brampton to Barrie. We move on June 15th. The apartment we are moving into is just a little bit smaller but the layout is very different. It’s going to take a while to get used to it, but we are looking forward to the change. All the stores we use are walkable in good weather so I will definitely get the excercise that I desperately need. Can’t wait to be able to move around pain free. The movie theatre is just on our doorstep, we won’t be bored.
I have to say, in regard to my surgery, a radical cystectomy is big surgery. It is uncomfortable and when the doctors tell you that you are going to loose 20 to 25 pounds and for the first three months you will feel like you have been hit by a truck, believe them BUT your cancer has gone your life has begun again. I was thrilled when the pathology came back as definitely no muscle invasion, no cancer cells were found in the rest of the material they removed either. Life must go on in it’s new fashion and that change is becoming easier to deal with. It’s nearly four months from my surgery and although I am a month behind in my planned recovery it’s onward and upwards from here on.
My love to everyone who is either staring cancer in the face or recovering from their surgery – there is light at the end of the tunnel, determine to win and the chances are you will.
Judy
Date of original post Oct 29, 2021
Hi all!
Well, my husband and I went down to Toronto General this afternoon so that I may have a cysto to determine which route to take. We were, of course, hoping that the doctors there might be able to come up with another treatment that would work. We were wrong. My tumour, which was impossible to see in August, has now covered most of the base of my bladder and has begun to work it’s way around. After five years of having cysto I have never seen so much tumour. We met with Dr Kulkarni afterwards and he said just what we thought. There are no choices left. Cystectomy is the only treatment available to me. He will be scheduling a MRI because I have several surgical staples in my abdomen from previous surgery 30 years ago and the MRI will give him a better look at where they are. He is planning to operate in December. So, thank you all for your support and will give you updates as soon as things happen. Have a good night
Judy
Date of original post Sept 19, 2021
Hi all!
Well, had a virtual consult with Dr. Kulkarni on Friday. What a lovely man, I felt very comfortable speaking with him. Cutting to the chase it appears that bladder removable surgery may be the best thing for me to have a quality of life from here on in. He will be setting up a cysto so that he can see with his own eyes and then a meeting with him in person immediately afterwards. That seems to make absolute sense to me and then I wait with bated breath for the visual and verbal consult. Thanks for listening to me and offering me all the help. I may be looking for assistance in the post surgery issues.
Judy
Date of original post Aug 28, 2021
Well friends, I thought I would bring you up to date.
We had an appointment on Thursday with my urologist and we found out that the Mitomycin didn’t work either. What a waste of 18 months.
Two BCG and One Mitomycin major resistance. My Urologist had now referred me to Dr. Kulkarni at Princess Margaret. My case file was sent to him yesterday. Now we wait again. Now I have a major decision to make.
Three TURBT, three chemo and nothing did the trick. In some way I happy to go down there to see the specialists, but in another way I am curious that my body didn’t accept these treatments.
I do know that this decision is going to be tough,but how much more can I take.
Aaaaarrrrrgh!
Judy
Date of original post May 30, 2021
Hello people,
Haven’t been online for a while but I am back.
I have just finished a six week course of Mitomycin C. I cannot believe the difference in my life. I am, at the moment, in no pain, for the first time in almost two years. The Mitomycin treatments started in the middle of April after my TURBT that I had in March.
I cannot believe the difference in my life not to be in pain. I am not saying all things are easy, because they are not. I still have the tiredness and sheer exhaustion even though I don’t have the energy to do anything. This will pass.
Unfortunately my next Cysto is not until August. The delay is because of Covid problems here in Brampton. We have had, until recently a 22% positivity rate. Since vaccinations have started it has dropped to 15%. Still high but coming down. Consequently all available hospital space has been taken. Never mind . I spoke to my urologist and he said it will give my bladder time to prosper heal. He doesn’t want to mess with it as if this cycle continues I will be looking at a bladder removal. Not necessarily what I want but he is giving everything a good time to properly heal. I will give him the benefit of the doubt.
Thanks for listening, talk soon
Judy
Date of original post April 8, 2021
Hi Mike and Tana
Thank you so much for your concern. As you know every little bit of friendship really helps.
I actually just received a call from the hospital to tell me that my treatments start on April 22 for six weeks.
Mike, you said that the tumour must have been large, yes, it was CIS and it had grown almost completely down the back wall of my bladder yet the TURBT was not painful. They did give me wonderful drugs this time and bonus of bonus because of Covid I had a private room. Luck of the draw.
With regard to your comment about Toronto, I live in Brampton and although we have a great hospital, they are limited as to what to do so he’s told me that other than bladder removal he has come to the end of treatments that may be available locally. Obviously the teaching hospitals downtown have all the bells and whistles available to them and one of the downtown hospital’s has a wonderful Cancer Care department and he thinks that the treatments they offer will benefit me.
Although it is a bit of a hassle getting downtown, I believe they may be able to offer more services than Brampton can.
Once again, thanks for the friendship and I will keep in touch.
Judy
Date of original post April 7, 2021
Hi guys,
Here we go again. My TURBT was only March 17th.
There was a large tumour covering almost entirely the back wall of my bladder. Met with my urologist this afternoon and CIS again. Bigger and better. His plan is to start a course of Mitomycin as soon as the hospital can fit me in and take another look on August 10. He was upfront and said that if this doesn’t work then he will send me downtown Toronto as they have more options than we do in Brampton. So, here we go again! Anyone have experience with Mitomycin?
Date of original post Mar 4, 2021
Hi all!
Just received a phone call from my Uro’s office saying March 17 is the date for TURBT for me. I guess we will see what happens next. From my eyes this tumour seems to be the largest and more difficult to remove. It is pappiliarary? Can’t spell, but it is covering the back wall of my bladder and moving down and across. I am amazed at the speed of this growth. Four months and it has covered a large space. I complained jokingly that they added vitamin C to my BCG treatments in October and November. Oh well, at least I have a date. I am not Irish but my grandson told me it is the luck of the Irish to have surgery on St. Patrick’s Day.
Well, onto to other things today, have a great day everyone!
Judy
Date of original post Feb 3, 2021
Thanks for your response Jack. I certainly appreciate it. Right now I am Debbie Downer because three cancer surgeries in 14 months is just a bit too much. Together with two BCG treatments and probably a third one. I’ll get over it but I will certainly get hold of you once the biopsy reports come in.
Judy
Date of original post Feb 3, 2021
Thanks Tana for the support. Today I just feel angry. Some people have written off 2020 due to Covid, I have written it off for Cancer. Looks like 2021 could be the same. My last appointment with my Urologist after the TURBT in August was that perhaps we may have to start thinking of alternatives to this constant surgery. Can anyone fill me in on the values of alternatives whether is it bypass type surgery or anything else. I don’t feel educated enough to make that decision yet. At least if anyone can make suggestions where to go for more info.
Thanks Judy
Date of original post February 2, 2021
1:31 pmHi all again! Well, just got back from my check up cystocopy and guess what, more cancer. Third time in thirteen months. Another TURBT to be scheduled and another round of BCG I guess. Forget Covid, I just wrote off 2020 and it looks like I will be writing off 2021 as well! Hope everyone else is feeling fine and doing well.
Hi again, I just wanted to let you know that I have started eating as per the IC diet. You can find it online on the Interstial Cystitis website. It has really helped my pain. Might be worthwhile taking a look at it.
Judy
Date of original post November 25, 2020
Lefmike and Tana, nice to hear from you Mike. This is becoming a large circle. I have to wait until January 12 to look inside before we make any decision. I too had the bypass surgery discussion with my doctor a couple of months ago, we were discussing what alternatives are available. I guess we might have to go over them again if this BCG series haven’t worked. Mike, how did you find the interferon additive? Did it effect you in any way? It is so nice to chat with someone who has positives thoughts. Where do you live Mike.?
Oh well, back to stuff, chat soon!
Judy
