Fight Prostate Cancer
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ONE YEAR POST RADIOTHERAPY

Just wanted to let you know that at my last check one year post radiotherapy my PSA is now undetectable. I am doing OK too. A few late onset side effects after 6 months which may or may not be radiation proctitis - gastroenterologist says it is but onc says it isn't. Am hoping they will sort something out between them soon. Am treating it with various things which may work - certainly things have got better generally since I started the treatment in October and I can live with things as they are so long as they don't get any worse.

All the best to everyone here.

Des

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That’s interesting. I had 37 radiotherapy treatments over two years ago. As a result of the two yearly bowel cancer screening I was sent for a colonoscopy and the Consultant who did it said that was was some slight damage caused by the radiation and that it was not in any way serious. I have to go and see him next week to discuss the results of the colonoscopy. Shall be interested to hear what he has to say.

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So happy for you xxxx

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Thank you. How are things with you?

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Great news! Sorry about the GI issues. I also have issues after 38 rounds of radiation and surgery. But rather have to deal with that than not get treatment and deal with untreated cancer.

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Is there any way one could know for certain what the issues would be if one did not get treatment for cancer ?? Death for certain, in due course, but after how long (in years) and with how much suffering ?? As compared with the pain, trauma, cost of surgery and the low quality of life after surgery ?? I have just been detected with prostate cancer (Gleason score 3+4=7) which may have spread to the spine (will know soon). My uro-oncologist figures that the cancer could already be 1.5-2 years old. I have had absolutely no problems thus far apart from the usual problems associated with enlargement of the prostate. I am genuinely looking for an answer (approx will do). I am 61 years, 4 months old. I am totally open mentally to just about anything.

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Dear whatsinaname, the amount of time you would have is dependent on so many variables that it is hard to define. However, once the cancer has spread past the prostate then the numbers do not look as good. The following is taken from the American Cancer Society’s web page.

“ Distant stage includes stage IVB cancers – cancers that have spread to distant lymph nodes, BONES or other organs. The relative 5-year survival rate for distant stage prostate cancer is about 29%.”

Please note that is for people that get treatment. Then again there are men with metastatic cancer that have been here for over a decade.

I do take strong disagreement with the statement of low quality of life after treatment. I had surgery where they also remove cancerous lymph nodes, 38 rounds of radiation and I currently am on a combination of Lupron and Zytiga. Yes most of the side effects suck. The one that does not is life. I rode my bike for over 1000 miles last year, went on two Caribbean scuba trips (and getting ready for my first trip of 2018). By the way, when they found my cancer it was also advanced. They originally gave me only a 23% chance to make it for two years. That anniversary comes up in a couple of weeks.

Of course you will do what you want. But please do not consider prostate cancer as the “good cancer” and life after treatment as low quality.

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Thank you, Dr_WHO, much obliged.

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Hello whatsinaname,. My Gleason score was 7 (3+4) and at MRI looked like it was about to "break out" of the capsule. 9 months of hormone therapy and 20 sessions of radiotherapy a year ago have brought me back pretty much to where I began before the cancer. No ED problems now. Once the hormone therapy was finished - had my last 3 month injection in December 2016 before the radiotherapy in January 2017, the side effects from that slowly left me - I was told it would take about 9 months for the effects to leave me completely so now consider myself free of them. I did get hot flushes but to be honest didn't notice them until they started to go as they were not that bad. I did lose muscle but kept exercising throughout and the upside now is that I am at my ideal weight - something I never thought possible before the cancer. Although fit and active I had always been around 13 st. 7lbs but my ideal weight was least a stone lighter well now I am around that mark. So an added bonus as I am now within my ideal BMI zone! The possible proctitis that I have been left with is really no big deal and is getting better so am not too worried about it - just wish the docs would decide what it is so that possibly a better treatment and possible cure could be tried. Who knows things may just get progressively better on their own. I am quite happy with my choice of treatment after having watch my brother in law and friend die of prostate cancer a lot younger than me as they managed to get diagnosed far too late with PSA readings in their thousands though they managed to stay with us for about a decade but really their quality of life was really bad in the last few years being bed bound for quite a lot of that time - one died at 68 and one at 58 but that was with treatment.and also was nearly 10 years ago. Things are changing in treatment all the time. With your Gleason active surveillance may be an option depending on results of scans so you may be able to avoid any treatment for a couple of years and just wait to see if the cancer progresses some more before committing to any treatment.

All he best and keep in touch

Des

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Thank you, Des. I much appreciate the feedback.

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Absolutely - no contest there!

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whatsinaname-any effects from surgery is a walk in the park compared to dying of prostate cancer trust me. I still wake up every night thinking about what happened to my dad, am severely depressed and thinking of starting counselling this year to try and deal with it. It's also why I am on this site and still read up about it occasionally as a way of coping or trying to understand what happened to my dad/why it happened nearly SEVEN years on.

I believe most men recover fairly well from surgery, though I know it is not an easy thing to decide on. If you want an example of life expectancy without surgery-my dad was diagnosed at age 65 and died 8 years later. He had Brachytherapy instead of prostatectomy (it had supposedly not spread at that point but he didn't want the prostate out and was not talked into any option either way by his doctor just given the choices). So I can't say how long he would've lived without Brachytherapy, pretty sure it didn't do a damn thing though. 4 years later it had spread to lymph nodes (have no idea if it was in bones yet or not) about 3 years after that (1.5 years before he died) started experiencing bone pain. This gradually got worse and he was put on 2 types of morphine. Believe me though, pain like that the morphine can't touch-bone pain is one of the worst types of pain. Prostate cancer is fine whilst you don't have any symptoms, but once you start getting that bone pain it is REALLY bad. There are also complications from that like spinal chord progression which my dad had near the end, almost paralysis because of it. Barely able to walk, went from a fit man playing tennis to an old decrepit man in just a year. Chemo can help the pain as a palliative treatment but has it's own side effects. Because he could hardly move he also ended up with a terrible bed sore near the end whilst in hospital (evidently they weren't even equipped to care for someone in his position)

His friend had prostate cancer a few years earlier and died of it too but he didn't seek treatment until it was too late so i don't know how long he lived with it for. I don't want to scare you or anyone here, my dad's experience was terrible, I'm sure other men do not experience the same things and probably live a lot longer without any issues, for example I don't remember my dads friend not being able to walk like my dad, but it all depends where the cancer goes and how it affects you. And of course on the age you are when you are diagnosed. You said you wanted the truth...my dad's was the very worst case scenario possible, the last year was hell. Yes he had a very good quality of life with no problems at all for 7 or so years before we found out he was terminally ill, but a year and a half at the end is a long time to be in so much pain.

I just don't want you thinking, oh well I might have 10-15 years then I'll just die, I've had a good life- it's not like that, there could be a lot of suffering involved. My dad also lived in fear of it coming back-that worry is always there, every little bit of pain is like "is it cancer and it's gone into my bones?" He knew when he first had bone pain it was the cancer. That level of fear is not there if you have had the prostate out and caught it in time.

I understand you predicament when you are feeling well at the moment-you don't want the side effects from surgery so you are weighing up what it's like if you were to not have treatment. It's always a gamble either way. I wish you all the best!

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Thank you, Rachel2015, for taking the time and trouble to help me. Much obliged.

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Hopefully, by now you've made a decision. I can only concur with what others have said. Left untreated, PC will kill eventually. In the UK now, more men die from PC than women from Breast cancer. I had surgery nearly six years ago and can honestly say my quality of life is as good, if not better than before treatment. I recently saw my GP because a health check revealed a slight problem with my cholesterol. Pursuant to this a Qrisk2 score calculation showed that I had a 17%+ chance of Myocardial Infarction or stroke by the age of 83. We did discuss how I could decrease this risk, but couldn't really find a way. However, at the end of the consultation, I did say that I'd rather die from a heart attack than from PC. I told him I didn't have any choice in being born, but I might have some choice in how I die. The two questions you should ask about untreated PC are not how long, but how painful will it be? OR will i die of something else first?

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Yes, I have taken a decision. The oncologist is going to give me a combination of hormone therapy + radiation therapy + brachytherapy.

To my specific query as to how long I could possibly have had the cancer in my prostate and L4 vertebrae (this was confirmed detected on the 13th of February, 2018), one oncologist guessed 3 years, another 2 years and a third figured not less than 1.5 years. So, anywhere between 1.5 to 3 years or more. As of now, quite honestly, I am in very little pain. Not even 2 on a scale of 1-10. However, one of the oncologists told me to wait for 6 months to experience the real pain (he had a sadistic glint in his eyes), if I did not opt for treatment. Since my cancer had spread, surgery was not considered a prudent choice.

Yep, dying almost painlessly of a heart attack would be great, wouldn't it ? :-)

Cheers, Timz, thanks a ton for your inputs.

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Heart attack might not be painless, but it might be quick.

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Great news. 30 months after adjuvant radiotherapy I still have some issues with rectal bleeding and urgency but I would say they are getting better recently and worth the peace of mind with my pt3a tertiary 5 case. Just about to phone for 3 monthly psa result and hoping to keep the Zero's run going for a long time 35th month and counting

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Long may your zeros continue.

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