I'm Kate in Vic. It's almost 4.30am and yet another night without sleep since we found out my mum has bladder cancer. She went into hospital Wednesday for surgery Thursday on a suspected GYN-mass, and the first part of the op was to put a stent in her left ureter because supposedly the mass had squashed it shut.
So it was during the first part of the surgery that they discovered it was bladder cancer that was also wrapped around her left ureter, not a gyn-thing, they did the biopsy but the major surgery we'd expected didn't happen. And now we're in a holding pattern, waiting for Monday when we hope to get the results.
Everything seems to be going wrong though.
It started off wrong - her GP seemed bored and even went to sleep during one consult, we wasted weeks with him. Then our regular GYN has lost the results of all of both of our previous visits, so has no record of us ever having seen him, and was going off on a conference so couldn't see us.
We found a new GYN with a good rep, he did some tests and referred us to a guy who apparently is the holy grail of GYN-docs, and he is friends with the doctor who did Sam Newman's prostate! Finally we had 2 great docs, which was something of a relief.
But the Holy Grail doc dropped out when it wasn't a gyn-thing, and now my mum tells me that we're also losing the Sam Newman-doc and getting one of his "colleagues". There's also some talk that they may not be able to fit her in for surgery next week, and that she might want to go home, but she has cachexia and pain and I really feel that the best place for those to be treated is hospital, with a surgery that happens sooner rather than later - there have been too many delays already!
My mum has 2 choices at the moment - excruciating pain, or drug haze - so she wants me to be there when the docs talk to her, but I'm on public transport and don't want to risk travelling alone in the dark, and the docs keep coming when I'm not there, even though I've been there every day for 6-7 hours at a time.
My mum and I are really close, and I'm just blind-panic-scared all the time now, and I hate the way this is going, with losing the good doc after we found him, an unknown surgery date, and the hospital seemingly wanting to put her out-of-sight,out-of-mind.
I really need some advice. Thankyou.
I cant offer any advice unforunately i cant imagine how frustrating it must be for you and you're mum at this time,however keep persisting with the doctors until you feel you are satisfied with the treatment your'e mum receives really feel for you both at this time best wishes
Firstly your Mum should have good pain management, not the alternatives of excruciating pain or drug haze. Ask to see palliative care - going to see palliative care does not say that your Mum is terminal or anything like that - but they are the people with the knowledge and expertise about good pain management. I know the pain your Mum is having as at one stage I had cancer pushing up into the bladder and blocking off the ureter - the pain was excruciating. I react badly to opiates so wasn't able to have morphine, or Digesic or Tramal, but they got the pain under control and explained to me how to manage it myself. Once they got the cancer under control the pain went.
Secondly - someone who treated Sam Newman's prostate probably isn't the person for either a gynaecological cancer or a bladder cancer. You want an oncologist who specialises in bladder cancer not a surgeon who does prostate cancer.
Thirdly, I suggest that you ring the Cancer Helpline - 13 11 20 it's a free call - and talk to one of the nurse counsellors. They can provide you with a lot of information and let you know the sort of questions you should be asking.
An incorrectly identified mark is a hazard, not an aid, to navigation. Alton B. Moody
Than you Sailor. Yes, the Sam Newman doc has handed her across to a colleague who specialises in bladder removal. He came to the hospital today (a Sunday visit!) and apparently the tumor is currently too big for surgery, so the first steps are to increase her weight/health and also chemo to shrink the tumors. I just keep wondering when the bad news will end?
I probably exaggerated about the "drug haze" ... just that on the Endone she tends to sleep a lot, and off the Endone she has pain. Then again, sleep's probably a good thing for her. While in the hospital she's been gaining weight back, about 500g a day, but now it looks like they might discharge her into my care, and I just hope I can maintain that progress. I'll be speaking tomorrow with the Dietician and the Discharge Nurse for more info, and also hope to call the Cancer Council as you suggested.
Thank you so much for replying by the way ...
My mother was diagnosed with bladder cancer last year - I think in July? And you are describing a lot of what my mother went through with doctors and nurses. I am still so angry about the doctors and nurses who treated her. It just seemed to be so hard to get her some help!! And I don't know if that's the norm or not? Getting my mother's pain management under control was a nightmare too. It seemed like she was either sleeping or in excruciating pain. 😞 So I can totally emphasise with what you are going through.
My advice is to be very vocal for your mother. Ask lots of questions and take notes. And if your mother is struggling tell them and tell them to do something about it.
It's not an easy time and it won't be an easy time ahead. I'm wishing both you and your mum lots of strength.
If you want to talk feel free to PM me.
BCa is highly treatable if caught early. But 'treatable' here only means getting rid of the immediate tumour/s and any surrounding disease. BCa is highly recurrent, so a change in lifestyle is worth considering to maximise both handling the treatment and enhancing survival.
As to what treatment is best, there are different ideas. But perhaps best to bear in mind that lifestyle is thought to be behind 70% of BCa.
There's two schools of thought about whether to have the bladder out right away, or do watchful waiting (I have the latter, even tho' the worst diagnosis - G3/T3/N3/M1 - and in remission this last 30 months, after being told 2+ years ago that I had weeks to live; so there's hope!).
The best survival stats to date indicate it is best to have chemo first and then RC (radical cystectomy). However, RC has a 1%-3% mortality rate and up to 50% post-op serious complications.
See also: Improving Survival for Patients with Muscle Invasive Bladder Cancer Dr Ralph de Vere White: An overview of Chemo, RC & survival + new predictive diagnostic with an excellent presentation of the need to do chemo first, then RC with >10 node removal
This states unequivocally that Chemo should precede TURB and RC for maximum survival chance.
A major review is that of Dr Bajorin:
See: Update on T1HG disease - RC or Not RC? http://www.urotoday.com/index.php?option=com_content&task=view_ua&id=222983 2
To reduce the chances of recurrence and probably extend survival:
Firstly, exercise - 30'-60' day, as vigorously as poss. I walk about 60' a day; sometimes jog for 30'. There's a mass of evidence that those who survive longer exercise more.
Nutrition: move to more fruit and veg and away from meat (especially processed meats - sausages of all types, bacon, etc; white meat if you can't resist). If you can afford it, organic. Juicing once day - a combo of broccoli, cauli, beetroot, ginger, pineapple, cucumber, apple, Brussel sprouts is my preferred. See also:
the 'orthodox medico who's found that CAM works' of Dr David Servan-Schreiber (check out his "Anti-Cancer: a new way of life") http://www3.mdanderson.org/streams/MDACCFlvPlayer2.html?xml=publicEd/config/Anti-Cancer_cfg.
and http://www.integrativeoncology-essentials.com/topics/FilesDownload_files/IO E%20Guide_V3.pdf ("Integrative oncology is no longer an “alternative” approach to cancer care. Increasingly, prestigious academic cancer centers (for example: Harvard, Memorial Sloan Kettering, MD Anderson, Duke, UCSF) are incorporating integrative oncology within their practice of taking care of patients living with and beyond cancer.")
Avoid sugar, fast-carbs (bread - but rye if you can't give up - pasta, potatoes), alcohol, coffee and perhaps dairy products.
Supplements: as well as a good background multi-vit/mineral (I use NutriShield monthly packs), Vit D3, then up to 12g/day of curcumin+piperene, boswelia, astralagus, and white/green tea for anti-cancer; probiotics, beta-glucan or similar immune boosting pills, mushrooms and their extracts. See http://www.informationisbeautiful.net/play/snake-oil-supplements/
I take or have taken graviola, spirulina, wheatgrass and pau d'arco tea in copious amounts.
My 'rule' is evidence-based supplementation with little or no known side-effects (nothing to loose).
I find feedback essential to see how I'm doing and as a motivator - indications of cancerousness by cancer markers (CEA, NMP-22), inflammation, body composition (weight, muscle-mass, fat).
Four things I'd add:
The orthodox overview is well shown in this and associated vids:
And maybe the best anti-cancer website:
A good overview for women is:
Check out the latest BCa stats on http://calendar.cancer.gov/aboutnci/servingpeople/snapshots/bladder.pdf
This shows that the oncologists don't seem to be making as much headway as their promoted treatments claim - incidents and mortality has been constant for 20 years, despite all the claims and money.
For another view on survival rates for BCa
Note that all seemingly poor cancer survival rates are heavily front-loaded - that is, quite a few die quickly but a lot live a lot longer than the average. A lot of colleagues here have lived many years since being diagnosed with very bad BC - so it is possible to get by OK.
Best wishes, Ian
Thank you Ian for such a thorough and informative post!
On my way out now to see my mum on what should be her first day of Chemo, but I absolutely will follow up on every link you posted when I get back.
Stay strong, and again, thank you!
Hi again Kate,
I didn't pick up that your Mum was about to start chemo.
You and she may wish to know that there are some things that enhance the effectiveness of chemo and reduce the side-effects. Here's my brief summary:
Vit.D3 4,000IU-12,000IU daily – enhances efficacy of chemo
Magnesium 500mg daily – replaces severe depletion
10 grams (3 scoops) of glutamine powder 3 times a day to minimize the side effects of chemo including neuropathy
Vit.C – 1 – 5 gms/day
Curcumin + piperene – up to 10 gms/day – enhances chemo, especially cisplatin, and reduces chemo damage
Co-Enzyme Q10 100mg/day – chemo harms the heart; Co-Q10 helps it
Omega 3 oil 5gms EPA – helps preserve muscle in cancer patients on chemo
Green or white tea
Astralagus - an immune booster ; anti-cancer generally;
Aloe Vera – enhances chemo’s effects, enhances apoptosis, improves immune system
Resveratrol – enhances chemo’s effect
Stay off sugar, sodium (salt) and fruit juices
Exercise: as vigorous as possible – walking 30’ day, jogging if poss., and resistance training
Best wishes, Ian
I wish I'd heard this information before my mother had her RC. She didn't start with chemo which I think was a big mistake. And I don't know why her doctors went for an RC first if it's been shown to be less successful than chemo first. I am very frustrated by the treatments my mother had. I think her doctors made mistakes and did a terrible job, I wasn't involved in my mother's early appointments and treatments though because I kept being told that bladder cancer is highly treatable and there was not going to be any problems. I now regret not being involved in mum's appointments because then I would at least have more of an idea of what happened. I think that doctors thought that her cancer was contained within the bladder which is why they did the RC. But I don't know why they couldn't see that it had spread dramatically. Soon after her RC she ended up with an obstructed bowel due to the BC having spread and had to have a second major surgery. Then she could never get her strength up to have chemo. I am so mad about my mother's treatments and the decisions the doctors made. I think they made big mistakes.
Ian were you a smoker? And Kate is/was your mother a smoker? I think that was a huge factor in my mother's cancer.
Thinking of you Kate and your mum. It sounds like your mother is on the right track for treatment.
All the best,
We're glad that you are finding Cancer Connections a useful place to share your experiences.
We did want to remind you that this site is not to be used to provide medical or treatment advice (for more information about the purposes of our site, please see: http://www.cancerconnections.com.au/content/how-use-website)
Although we encourage the frank and open discussion about treatments, and lifestyle changes that you might find helpful, we would always empasise that you should seek the advice of your health care professional before using any complementary additional treatments. There are certain 'complementary' therapies that can certainly improve the physical or spiritual wellbeing of people with cancer, or to reduce symptoms or treatment related side effects. However, there are also treatments which may be harmful or interact with other treatments. For those of you who would like to know more, there is some useful information about this at http://www.cancervic.org.au/about-cancer/types-treatments-trials/about_alternative_treatments.
As always, we would also encourage you to call the Cancer Council Helpline on 13 11 20 (within Australia) if you would like to talk these things over.
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