Feeling guilty

Hi everyone, this is a bit of a long story,

I have posted before. I lost my dad to prostate cancer 5 years ago at age 73. I am finding it difficult to deal with (still) knowing it all could've been prevented. At the time of his death I didn't really fully realise how curable prostate cancer was with a radical prostatectomy (over 90% I think?) My dad did not want this, he was very diligent with going to the doctors but then when faced with having the prostate out-he decided to go with Brachytherapy instead. I was only 15 at the time (he was first diagnosed in 2003 at age 65) so I did not go to the doctors with him but I read up about Brachytherapy and it was supposed to have similar cure rates to having the prostate out so I was quite happy for him to have this instead and none of us tried to convince him to have it out-we had no idea what this would cost us.

This came 2 years after my mother had survived Bowel cancer-which was caught just in time, I think it was stage 3. So when my dad was then diagnosed with this "slow growing", low PSA low gleeson score, it seemed far less serious than my mothers cancer so I wasn't too worried at all since my mother had survived a more serious cancer. However, my mother had surgery to remove the cancer and that is why she is still here 15 years later. My grandfather had died of prostate cancer at 55, but I just put that down to poor medical treatment in the 1950s-there was no Brachytherapy then. Though his pain relief was probably better than what my dad got in the end in 2011!

The oncologist was not very helpful- I think he told my dad that with the family history he should probably have treatment, but just gave him the options-leave it, have it out, have Brachytherapy.

So my dad didn't jut want to leave it but didn't want it out either so he went with Brachytherapy. It did not work and he was then put on hormone treatment 4 years later. 4 years after that he was dead (2011) I know if he had decided to have the prostate out he would still be here now! His father died of prostate cancer and so did his friend (but he had left it without treatment)-this was like a massive warning but my dad still did not want the prostate out! He thought Brachytherapy would work. I feel so stupid for not persuading him to have surgery. I guess that is the problem with prostate cancer because it's so slow growing-do you gamble and hope it never becomes a problem or do you have it taken out? If it was a fast growing cancer you would have no choice-they would just take it out not give you options and say it's so slow growing let's see what happens or experiment with radioactive seeds! What went from one of the "less serious cancers" (even though it kills thousands of men a year) became the worst thing possible.

Well my dad thought he was seeking treatment by having Brachytherapy not being one of those men who leaves it, and we all went back to normal and just assumed he was cured (it seems crazy now that we weren't worried at the time) if he'd had the prostate out he would still be here, he had a low PSA and gleeson only a 6 I think confined to prostate. I feel so guilty, maybe this is the wrong site to post on when there are men suffering right now from it, but I'm just at a loss I feel so bad about it, guilty, angry, my life and families life is forever changed when he could've just had an operation and still be here now enjoying life. It's knowing that the cancer was confined and so easily treatable that gets me-if they'd caught it too late then there's nothing you can do, but we had the best prognosis at the time and he just chose the wrong option and it cost him his life.

11 Replies

  • The thing about cancer is that whoever you are wherever you are when they tell you that you or your loved one has it life changes. Take it from me, please do not do "what if's". Yes, if we could see 20 years in the future we could pick the best options. The thing is we can not. For about eight years the Dr's said that I had an enlarged prostate but that it was nothing to worry about as my PSA was low. That all changed last January where they found that I had advanced stage 4 cancer. It is a rare form that does not raise your PSA. Had surgery last April (T3N1Mx). On hormonal therapy and will start radiation once I no longer have to wear diapers. I chose not to do "what if's". Yes, if I pushed the issue years ago they may of found the cancer when it was curable and not just manageable. I find some confort in an old saying: "Make BAD decisions, those are decisions that you make using the Best Avalable Data". That is what I did and what you did. It did not work out that well for either of us, but at the time we made what we thought was the correct call. Please find confort in that sometimes there is no easy answers.

    God bless.

  • I agree with Dr_Who's advice. Its hard to deal with but you must not feel guilty or blame yourself. My family has a history of cancer and even if you have a psa that is low after treatment you are not cured you are said to be in remission. I had my prostate removed 2 years ago and so far so good. My brother in law has had treatment for pancreatic cancer. It was diagnosed 6years ago and as you know its an aggressive form of cancer. He is still going much to the amasement of the doctors. Try and move forward and be positive. It is sad it has happened but I am sure your dad would not like you to feel like this. You show a lot of care and I am sure that he knew this. Try and move forward. God bless and my prayers are with you.

  • Thank you Dr and Des. Dr_who-if you had the prostate out will you not now be cured of it? I hope you are. I'm sorry it took so long for you to be diagnosed too. I like your saying, it's a comfort.

    I may see things in a very idealistic way, but if it was up to me-I would find a way to make prostate surgery not have any side effects so more men (I would hope all affected men) would have the prostate out. I would also have all men checked from age 40. Maybe way too idealistic. I just hate the though that men are still getting this and dying from it when it is supposed to be one of the less serious cancers with the attitude "so many men get it, it's so slow growing, most men die of something else". This is crazy to me, it takes 10,000 lives a year.

    it has even crossed my mind that the Brachytherapy itself maybe spread the cancer-this treatment never brought the PSA down by much, certainly not like it should have done-but at the time I didn't know that. Or maybe the procedure wasn't done correctly. If he had left the prostate and done nothing he may have been better off! So many what ifs. It was all so long ago when he made the decision (2003or04).

    When we all found out it was advanced we all went to the doctors with him, I tried to make up for not going before, but it was too little too late by then.

    Des-I am sorry about your families history of cancer-glad your brother in law is still going strong, that is indeed amazing, I know pancreatic cancer is very aggressive. I am glad you had your prostate removed and are doing well-hopefully they got all the cancer out-I know my dad worried a lot after treatment because the prostate was still there. It's so hard to try and be positive, I guess I will get counselling at some point as this sort of thing would be more appropriate for a psychiatrist. I will stay on the site and try and help others where I can based on what I know from my dads experience.

  • Thank you for asking. No I am not cured. I will have cancer till the day I die. At the time of the operation it has spread past the prostate and into the lymph nodes so it can be anywhere. That said, I may (will) have decades of time here with my wife. Taking out the prostate and 15 pelvic lymph nodes removed the primary sources of cancer. Now it is "just" a matter of tapping down any free cancer cells. Doing hormonal therapy now and will start scavenging radiation soon. Not letting it keep me down. Have been doing >30 mile bike rides with my wife (not letting having to wear Depends keep me down) and we are planning on going SCUBA diving (have to work around radiation treatments).

  • Hello Rachel,

    Actually, brachytherapy is considered reasonable with more often killing off cancer cells resulting in cure. Some Radiation Oncologists either start with brachytherapy then follow with external beam radiation, or alternatively start with external beam radiation and follow with brachytherapy with the expectation of better chance of total cure; but despite these procedures, still end up with recurring prostate cancer - an indication that despite earlier imaging indicating the cancer "appears" contained within the prostate gland, some cancer cells had already migrated outside the bed to either adjacent lymph nodes or into seminal vesicles - usual route of migration to eventual metastasis. Please do not blame yourself for this likely occurrence and recognize that is was your Dad's choice since he likely didn't like the idea of "surgery" - the reason many men opt for radiation.

    The advantage of surgical removal is that in addition to the prostate gland removal, seminal vesicles and a sampling of adjacent lymph nodes are removed for the pathologist to review and determine if cancer cells were found in those organs. But even with the extraction of some lymph nodes that appear clear of cancer cells, other lymph nodes not extracted may be where cancer cells had already migrated, and thus recurrence of prostate cancer can also result from surgical removal. When that occurs, then these patients usually end up wit salvage radiation to the prostatic bed and its periphery to hopefully include other adjacent lymph nodes and eradicate the cancer. But too often, even that now salvage radiation following failed surgical removal fails to eradicate the cancer indicating some cells had migrated beyond even the periphery of the prostatic bed.

    I would be interested, if you have the information, as to what subsequent treatment was provided your Dad when his brachytherapy failed. External beam radiation would be a reasonable option, and/or androgen deprivation therapy shutting down his production of testosterone with either Lupron, Zoladex, Eligard, or Trelstar injections and blocking the path of testosterone to cancer cells with an anti-androgen tablet, usually Casodex since I don't think its generic bicalutamide was available back then.

    My point, Rachel, is even if the "what ifs" could be answered with should he have had surgical removal instead of radiation, that surgical removal may have ended up failing to eradicate cancer cells that had already migrated well beyond the prostate gland and its periphery. So you shouldn't beat yourself up believing you failed your Dad in some way. YOU DID NOT! I have always called our men's Prostate Cancer as being "insidious" since if most certainly is. To this day we still don't have all the necessary understanding so that we could know the best option of treatment that would hopefully "do the job" so that all cancer cells were eradicated throughout our body.

    I am pleased, however, that your love for your Dad has made you wonder "what could I have done to have extended Dad's life?" Take pleasure that your Dad is aware of your concern and likely wishes there was some way to communicate to you his appreciation for your concern. I expect he feels he made the right choices with the information available to him at the time of diagnosis.

    I can only hope this explanation will ease your burden of concern. My belief is your Dad would not want your continued worry and concern, but rather want your memories only recalling the good things you experienced during his lifetime.

    Charles (Chuck) Maack theprostateadvocate.com

  • Dr- Glad you are not letting it get you down. Scuba diving-wow that's brilliant! I love your positive attitude even faced with what you are facing-I think that will help you a lot.

    Hi Chuck, I know you! I used to post when my dad was still here for advice on an advanced prostate cancer yahoo group-you and others were so incredibly helpful answering all my questions. I stopped posting in that group about a year after my dad died. I am so happy and relieved you are still going strong! Can't even remember my password or username for the group now to get on the site and reread my posts but maybe you could do a search somehow if you are still in the group and interested in reading his story again. I wrote a lot of posts in 2010 and 2011 probably with the username "rachel something"-can't remember now!

    After the Brachytherapy failed he had hormone therapy-with Lupron I think, or one of those you mentioned. Then when he started getting the bone pain he had radiation to the mets mainly for pain management. He also had chemo for a couple of months.

    Thank you for the kind words everyone it really helps. I think I find this some sort of therapy talking about it, even though there is nothing i can do to change anything.

  • Rachel, I hope if you have brothers they know that they are more at risk and should get an early PSA test in their forties to give them a base line. Then testing every year even if they have to pay for it. There are some cancer centres that are asking men with prostate cancer whose families also have a history of prostate, breast and ovarian cancer to have genetic testing. I am going to try and get my sons on this as their Mum died of ovarian cancer and I have prostate cancer it is also quite likely that my Dad had prostate cancer when he died but he was 89 and suffering from pneumonia so did not die of the cancer. Again my grandfather certainly had prostate symptoms but was not diagnosed with prostate cancer but died of bowel cancer. Am hoping that they qualify for the testing as I am not confident with the private testing sites I have looked at so far and though the NHS and I have had a few " disagreements" they are still one of the best services in the world.

  • Hi Des-my brothers aren't the sort to get tested, unfortunately history repeats itself and I doubt they would get their prostate removed even if they did get diagnosed with it-even after seeing the hell my dad went through. Just the same as my dad who did not want the op even after seeing his own father die of it-they are the type of men who won't even get their pet dog spayed so are highly unlikely to have treatment themselves. They don't have children so if they got diagnosed and didn't have treatment I would respect that as it's their life and they wouldn't be forcing any children to watch their suffering like we had to watch our dad. I also have decided never to have children so this cancer gene if we have it will die with me-I will NOT let it be passed onto anyone else after us.

    I'm sorry about your history of cancer in the family and well done for trying to get the testing-I really hope they qualify.

  • Well Rachel there is not a lot you can do if they do not want to do anything themselves. There is it seems a prostate cancer vaccination being developed/tested at the moment - haven't read up on it as just seen a post on FB this morning about it. Catching cancer really early means less and easier treatment and a cure. With the progress being made almost daily in treatment things will be so much different in just 2 years time let alone 5 or 10 years time. Everyone does what th have to do and what they can live with. We cannot change that we can just be there for them and offer our help, support and love through their lives.

  • Rachel,

    I cannot add much more to what others have said in their replies. Each man having been diagnosed with prostate cancer has to make decisions over how they wish to proceed. My advice is always to listen to the Urologist or Oncologist. I had a random psa test in July 2015. That gave a reading of 5.0 (about the maximum 'normal' level for a man in his 70s). I was 75. A rectum exam showed a small lump on my prostate. Biopsy gave a Gleason score of 3+5=8 (aggressive). CT, MRI and bone scans all came up negative, with no spread from the prostate. Although most centres have a 'cut-off age of 70 for radical prostatectomy, my Urologist said that as I was 'fit and healthy' he could offer radical surgery by Da Vinci robot controlled keyhole surgery. I went for that rather than some other 'lengthy' treatment. I had the op on 24 Nov 2015. No pain at all during the 3 hour procedure nor afterwards. I went home the next day. Wore a bag for 8 days and used pads for about 6 weeks. PSA settled at 0.1 ever since. I accept that erections are no longer there, nor ejaculate BUT that is a small price to pay for the clear result.

    I am SURE that all men should have PSA checks after 40 years of age. I had really no idea at all about prostate cancer before having the checks. The point is that I had no symptoms, pain, aches at all prior to my wife suggesting that I had the original psa check...

    I am sorry for your loss, but as I said above, we are all different and must take the treatment that we prefer. Perhaps things could have gone better long before your dad sadly died, as a low Gleason and a psa of 6 does not look too high. But I agree with others in saying that we must not keep harping back to 'what ifs'.

  • You made the right decision, if all men made the same decision deaths from prostate cancer would be much lower, it doesn't seem to have affected you too badly so why all men wouldn't choose that option is beyond me.

    I know I can't keep going over the same thing with regards to my dad-but there are still men on here asking if they should just leave their cancer and watch it?! Or have some other treatment instead of a prostatectomy when a RP is an option-no it's cancer, get it out of your body! It might be a slow cancer but it WILL get you if you leave it, what other cancer can you just watch that leads to so many deaths? Breast cancer? Hell no, no one would leave that. I would also say to all men that it is not just your life-your family will have to watch you go through it, so if you have children and care anything about them at all you will do all you can to make sure they never have to have that much worry and grief-harsh but true. Once you're gone your kids have to live with the memories of what PC does. Obviously this does not apply to the poor guys who have not caught their cancer in time, or cannot have a RP for whatever reason.

    But for me yes it is time to try and get over it-I have let what happened to my dad (or what he let happen to himself) ruin my life and youth for far too long.

You may also like...