My journey starts today

I had blood in my urine 3 months ago so went to emergency department of hospital. They did blood tests, found nothing, urine cleared up – they booked me in for cystoscopy in a months time. 3 weeks later more blood so went back to hospital – doctor told me was “probably bladder cancer” but it is typically “very slow growing so no harm in waiting a week to check” I had an MRI on that day – after waiting 8 hours, I was told no tumors detected and bleeding was enlarged prostate – I was relieved. A week later I went in for cystoscopy even though was convinced there was no need. As I watched the camera go in live on the screen I saw the smooth bladder wall and then strange branch like growths. The doctor says “That’s a tumour”. This happened about 5 hours ago so I am still processing things. Hopefully surgery will happen next week and I will take it from there. I am scared and not convinced that doctors know what they are doing.

Frankie – Bladder Cancer Survivor

On March 8, I celebrate my 60th birthday. 2019 is doubly significant as I also celebrate 30 years as a bladder cancer survivor. I am incredibly grateful and consider myself fortunate.

But on reflection I remember it being a surreal time with overwhelming feelings of disbelief. Mostly I recall the oddity of being diagnosed with a medical condition I had never known about or understood. Bladder cancer – the doctors were kidding me, right? I am a woman, and at the time of diagnosis I was 30 years old. Research informed me that bladder cancer was 50% less likely to occur in women and 50 years the average age.

In 1989 at age 30, I had a blessed life with a career in check and a happy family – running around after two small children. But I felt tired, was overweight and had a recurring UTI (urinary tract infection). When blood was evident in my urine, my GP ordered further tests. I was shocked when a tumour occupying 90% of my bladder was detected.

Immediately I was paired with a prominent Urologist and soon I became known as that young girl in Ward 3 South at Cabrini Malvern. Life as I knew it changed for ever and my case was shared widely in medical journals.

Surgeries and several treatments of BCG ensued, instilled in a catheter and lying on a gurney I rotated 90 degrees every 15 minutes. The tumour was successfully removed and my bladder responded well to treatment. On the physical side, all boxes ticked.

Emotionally though, I was challenged and confused. This was the 1980’s, the big ‘C’ was still under a cloud and young people don’t get this disease anyway. Ironically, I became aligned with my father and father-in-law. Aged in their 50’s and 60’s they too were visiting respective Urologists’ and each was in early stages of prostate cancer.

Entrusting the medical fraternity with managing my physical issues, I began a gentle regime changing my approach to mind, body and soul. I shifted my focus to improving everything I could control as a mother, wife and human. I shed kilos, exercised, stopped smoking and gave up the carnivore life.

Cystoscopies became part of my routine and I often walked to hospital from home. When I changed into theatre garb, the walk continued all the way into theatre, no trolley for me thank you. I made my instructions clear – strictly local anaesthetic. Remaining alert I chatted through procedures with theatre doctors and staff. I believed this would ensure I had the mental apparatus to live the experience and will myself to health.

It’s been an epic 30 years and in a recent post-cystoscopy chat with my Urologist we have agreed that I am clear of any nasties for now and I can ease up on the checks going forward.

My team of vigilant doctors have been a blessing and no less are my amazing supportive family. I am indebted to them all. To Drs. David Bosher (GP), Gabi Reisner (former Urologist) and Daniel Moon (current Urologist), thank you, thank you thank you…..30 years surviving has been largely due to you.

I urge everyone to be vigilant. Listen to your body, read the signs and act!

Frankie

Good Recovery

My husband has been diagnosed with bladder cancer and will be operated on in three weeks time. However, a close friend was diagnosed with a more advanced form 5 years ago, and after surgery and her bcg treatment it came back a year later. So she has had to have BCG treatment for three years in total, and now is on a yearly cystoscopy check up with no signs for the past year or two of anything. So we can say she is in remission. This treatment is very good.

Mike

I too was diagnosed in July 2018 with a high grade but non-invasive bladder cancer. Since then I had 6 weeks of BCG treatment followed by a further cystoscopy in which biopsies were taken. I’m glad to say that these revealed no cancer cells. I’m to have further cystoscopies every 3 months in 2019 with 3 weeks of BCG after the first one. I’m not sure if there’ll be BCG after the subsequent cystoscopies. All being well I’ll progress to 6 monthly checks in 2020.
The BCG treatment was something I didn’t find easy although the nurses were really good, being friendly but professional. I’ll never find catheterisation easy. It’s always been one of my great fears! I was fortunate with the BCG side effects. I know it can be quite unpleasant, but I got off pretty lightly with only feelings of great exhaustion.

First 6 weeks of BCG

I was diagnosed with both non invasive and invasive July 2018 and have now completed my first 6 weeks of BCG. The roller coaster ride, the journey, has certainly be interesting.

I am now waiting for my next Cystoscopy in a few weeks.

I am looking for anybody that has been through similar treatment and what their outcome has been, short and long term.

My Dad has bladder cancer

Hello,

I am currently having my Dad go through Bladder Cancer. He was diagnosed with a tumor back in September last year a biopsy was and it turns out it was cancer on the bladder. He was not a smoker, rarely drinks and lives a pretty good life. He was turning 70 in December so this came as a huge shock to all of us. We had to have an operation to remove the tumour because that was causing him so much pain, we were in hospital a few times because the pain was so excruciating for him. Once this first operation was complete we had to go onto chemo to help with the remainder of the cancer. We did 4 cycles of that which took 4 months and then last week he went in for major surgery for 9 hours to remove his bladder, prostate and some lymph nodes. Whilst they were in the operation the surgeon actually found some more possible cancer nodules and was not going to take any risks so he took them out too.

He has been in hospital for a week now and each day is different with pain or nausea, etc. All the general things you should be feeling after having major surgery and its upsetting him and frustrating him that he feels like he isn’t getting better but he actually is, he started the first day with 3 bags attached to his body and now he just has one which is the stoma bag for the diversion of his urine. (This is permanent) But by the 3rd day all but that one bag was gone, he is walking further and further each day. But he has this negative mindset the second one thing goes wrong. He’s not sleeping well and barely eating and he is snapping at both myself and mum, and that hits us hard. Today I actually got so mad at him I walked out. I get he is going through alot of stuff but so are we and if that attitude is going to stay then he can bloody well stay in the hospital because mum will not be able to handle that alone if he comes home.

He has just survived a cancer that could kill him, he should be thankful and positive and happy. The doctors and nurses and the surgeon even said how lucky he was that they caught this early. 6 months time this could have been a whole different ballgame. I need someone who has been through this and survived to go and speak to him and tell him he will be ok because us telling him has had no effect because he is doing is getting angry. He is a routines man, and very OCD so if something is out of place and not in the right spot or you say one thing he just goes off. Today he went off because the patients around him were being too loud. Like small stuff. I just don’t know what to do anymore or how to help him anymore than we are already doing.

Anyone got any advice, or want to go and speak to him for me? I think hearing from someone who has gone through it would definitely help him.

BCGosis…

Update on my BCG treatment was I never got to number 6, I was admitted into the San with what was eventually diagnosed as BCGosis… I basically contracted Tuburculosis, means I can no longer have BCG, am now having Chemo infusion…
3 down, three more, wait six weeks then a biopsy.
Very nervous about how this is going, hopefully not to removal of the bladder…
The journey continues.

My BCG Journey

I’m a 65 year old guy, whose life turned upside down in May this year.
I was already under a urologist for prostate cancer due to my family history.
I was walking over greasy rocks at Narrabeen and had a fall, cracked ribs, had blood in my urine…. had tests and was referred to another specialist who found elevated albumin in my kidneys, more intensive urine tests over a week found cancer cells in my bladder…. We received the news one night at 8pm…. was a big shock… The C word, went through all the emotions, asked how, why, all the usuals.
Two days later I saw my urologist who ran me through the procedures, offered my a radical removal of bladder, prostate, etc…. I declined. He then explained he would do a TURBT resection, this found tumours and suspect looking bladder walls, but not invasive, Over a few months I had three resections, each time he removed more material. After the first one they sent me home the next day, I was back in hospital that night with a blockage, very very painful, stayed in hospital another two days. The next two went as per the script, no problems.. I was then sent to another specialist for BCG treatment…
To date I have had 5, the 6th one is this Monday… then wait four weeks for a biopsy.
The good thing has been that previous biopsies have revealed no prostate cancer.
BCG has been okay, I picked up an infection after the second treatment, back into hospital for two days of serious antibiotics, then home to prepare for the next treatment.
I have had enormous headaches, stinging urination, but I take Ural which helps.
This time I have had major tiredness issues, just feel flat, no energy. Will see how I go after number 6…
If the biopsy comes back okay I go into three monthly maintenance. If the biopsy shows invasion then it all gets much more serious.
I feel confident, people are sympathetic, my wife is trying to feed me well… I’m very grateful to the team looking after me, If I had not had the fall, nothing would have been found until it was to late… I feel blessed, and wish everyone else well in their personal journey….Will post my biopsy results on Dec 20 2017….
Cheers
Steve

Bladder Cancer- common yet unheard of.

Following recurrent non-invasive bladder cancer over five years, resections, and treatment plans which consisted of BCG, radiotherapy, and hyperbaric treatment, in October 2014 my father lost his battle with Bladder Cancer at the age of only 48.
Following the failure of these treatment plans in early/mid 2014 he was advised to undergo a cystectomy and the formation of an ileal conduit. However, due to previous radiotherapy this procedure was extremely high risk. There was also a lot of confusion as to wether he still had the cancer at all! While in consultation with medical professionals regarding the next steps to be taken he was placed into palliative care and lost his battle just weeks later.
While bladder cancer is an extremely common cancer with a five year survival rate of only around 50 percent, it is mostly “unheard of” compared to other common cancers such as breast or prostate cancer which actually have a higher five year survival rate. Therefore, much more awareness of bladder cancer is needed!

Story from across the ditch

Husband is Aussie so hopes that counts! Bladder issues for several years before malignant cells found in urine in early 2013. Much delay & seemingly indifference from drs, disease progresses to stage 4 by June 2014. Chemo, RC with ic, which showed cancer in prostate as well as nodes & bladder. A few months later pain in pelvic groin areas. Told it was sciatic. Eventually groin nodes swollen & CT reveals Mets to bones. More chemo. Some response but now more areas in spine, ribs, & now node in neck. Palliative radiation ended with Greg hospitalised for 12 days. Losing weight fast with constant nausea & now an aversion to food. Maybe possible immunotherapy but have to rob a bank to do that!
What a ride! Not wished on anyone.
He’s only 62 yrs young but looks & feels 20 yrs older. Hunter, Fisher, DIYer, hard worker, mate to many, wonderful dad & hubby.
Yes, would love to support this group.
Travel safe to all.

If only…

My husband is only 52. Last Easter we came home from a camping trip and when he went to the loo and was peeing blood, it was literally red wine.

I took him to our local hospital, who did a prostate exam, which was clear and ordered an ultrasound the next day being a Thursday. The following Monday myself hubby and daughter went to see the dr for the results, a tumour in the bladder, off to the urologist who did a big and scraping and big, news wasn’t good, cancer, the biopsy showed a malignant tumour grade 4 grown into muscle wall.

It was decided to have a bladder removal and illeal conduit performed. News was good after taking the bladder, prostate and surrounding lymph nodes the all clear was given, no cancer in surrounding lymph nodes, a follow up appt was ordered for 6 months. 3 months later hubby had pain in his back and the local dr thought, and so did we, sciatica, off we went camping again, pain was bad and nobody enjoyed the camp. Went back the next day to the dr who then ordered an X-ray to see if a disc was damaged, it was back, the cancer had metastasized to the spine, rib, both legs, it was now in the bones. 😭

Oncologist was seen and the next day he was having radiation, 10 days of 6 zaps a day, followed by 4 months of chemotherapy, last week we were told the lymph nodes were almost back to normal size, the tumours had stated to shrink and no more chemo for a month. He will be having a bone scan at the end of April 2017, and will go from there. This is my husbands story, he had been given 12 to 18 months to live back in November, we will keep fighting and will never stop.

Bladder cancer needs to be made aware of more than it is.

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