Little Help from my Friends - Advanced Prostate...

Advanced Prostate Cancer
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Little Help from my Friends


Hello everyone,

To fill you in I am 59 and had robotics surgery to remove prostate. It was in my rectum but on second biopsy they got clean margins. I just got back lymph results and my Dr said it did enter a small segment of one. I'm taking casodex for last 3 months and will start radiation in another 2 months. My Gleason scores on 13 biopsies ranged from 7-9. Several questions1) I've seen that some of y'all have several different cancer docs and wondering if I should get another? Mine is urologist specialized in oncology. He was my 2 NFL opinion. And 2) how will radiation affect me? I will go everyday for seven weeks I'm told?

26 Replies

I think it helps to have a medical oncologist on your team. In general, radiation is easy. You can drive yourself. There's no pain. It can irritate your bowels, so you may want to trim some fiber out of your diet. I was no finer by the end. Bowel movements could be challenging for a few weeks. Long term, you could experience rectal or urethral bleeding, but these usually resolve without intervention. Good luck with it!

spm58 in reply to YostConner

Thankyou for your help. So when you say bowel issues , is there a warning?

YostConner in reply to spm58

The fiber was causing lots of irritation. it fully resolved within six weeks. Two years later I had radiation proctitus. I used a suppository briefly, but it also resolved in time.

I agree, the advice of a good medical Oncologist is invaluable , in particular one specializing in Prostate Cancer. I have heard it said that it is useful to also have a good urologist along with an expert MO. Lets hope they get it all with the radiation.


spm58 in reply to Dan59

Thankyou Dan I will look into that! Have you had radiation?

Dan59 in reply to spm58

I have not, mine was much further advanced when discovered back in 06, however my wife did after surgery and chemo for breast cancer last year, and for her it was just really not a big deal, just show up every day and when you are done your done.


I had Radical Prostatectomy in March 2015, immediately started on Calutide ( similar to casodex ) and after 2 weeks Zoladex- Androgen Deprivation Therapy ( ADT continuous for 2 years ) . Along with ADT received IGIMRT ( image guided intensity modulated radiation therappy, daily 36 sessions, dose : 74Gy ( strong dose ) to my prostate bed. No bleeding, no side effects from the radiation treatment because it is image guided ad very accurately focused. So my treatment protocol was very aggressive : RP + ADT2 + IMRT. Why? My cancer was very aggressive too being Gleason 9. It is advisable not to take chances with a Gleason 8,9,10 cancers. Should hit it as hard as possible right from the start by learning how to tolerate the side effects. Life is more important than anything else. You have not mentioned about your PSA. My PSA has remained since the implementation of the treatment regimen, throughout up to now at 0.008ng/ml ( undetectable ). I am not taking any treatment at present other than one capsule of Avodart per day to remain in stable remission.

It is good that you have a Urologist who is specializing in oncology. It will also be advisable to have a MO specializing in treating prostate cancer. As soon as possible learn as much as possible about Prostate Cancer so that you can become the Manager of your own case. Doctors, Medicine, Treatments, Research Information etc. are all Resources available for you. We must make our own decisions. It is our LIFE.

We are with you in need and in deed.


spm58 in reply to Sisira

Great info Sisira , my psa before surgery was 6.

Welcome to the group! My diagnoses was similar with the cancer spreading to my lymph nodes, G 4+4, T3N1, Ductal (very rare). Had surgery, 38 rounds of radiation and I am on Lupron with Zytiga (more on that later). Two things to know about radiation. They do not want to hit your bladder nor your intestines. What that means is you need a full bladder and empty colon. I had to change my diet to a high fiber one and stop eating at about four pm the day before being zapped to help insure my colon was empty. The bladder is like a balloon. When empty it lays down flat over your pelvic area, when full it expands away from the pelvic area. I had to slam drink a couple cups of coffee about 20 minutes before radiation. Since my bladder control is questionable, more than one time I had to run to the restroom after treatment.

No major issues with radiation. You can drive yourself there. The last two weeks you may feel a bit tired. I still have some minor rectal bleeding off and on but not major.

I am on a mixture of Lupron and Zytiga, two hormonal drugs. A recent study has shown better longevity using this mixture. A reference is listed below.

I would recommend that you get a medical oncologist. The need for a urologist is over and the radiologist job is focused on zapping you. The medical oncologist is the one that will have the expertise you will need going forward. For example they are the ones that could put you on Zytiga.

Good luck!

Thankyou all for your support . I'm not familiar with a lot of drugs and treatment here because my urologist feels I will only need radiation but I do want a second opinion.

Caring7 in reply to spm58

This is exactly why you need at least a medical oncologist to give a second opinion. Your urologist should *not* have a problem with that.

My husband has only had 5-doses per radiation treatment (spot welds) to bone. First one, he had some mild skin burns. Aquaphor was highly recommended by someone who had intense radiation, and it really helps if you get some skin irritation. Kind of super-vaseline I think.

His second spot weld was IMRT and he had less burning and only a little bit of intestinal side effect. Kind of just irritating bowel stuff.

You should be meeting with a radiation oncologist who will customize your treatment. Prepare a lot of questions, take a lot of notes, and hang in there!

BTW -- it's important to question your doctors. My husband had a regular annual physical. His doc found an irregular prostate -- and dismissed it! PSA was high normal range (but high for his age group) -- and falsified by taking some medicine for hair loss, which makes a urologist double the PSA. Doc was prescribing that medicine but blew that off too. Six months later my husband had extreme pain because of hairline fracture in his hip (bleeding into the joint space) and boom, advanced, stage 4 prostate cancer up into the spine. All the doc had to say was "probably nothing but maybe go see a urologist." I don't share this to scare you -- but just to say, your cancer is significant enough to have more people on your team.

Hope things go well from here.

I would encourage a second opinion or a second second opinion. As someone else said a gleason of 8 or above can be significant. A medical oncologist is also very important to add to your team. I found that my urologist faded away and the MO became my main doctor. Clean margins are great and the lone lymph should not be minimized. Stay in touch

bjorner3 in reply to charmander

Charmander - did your urologist suggest getting your medical oncologist? Or did you go there go there independent of urologist? I think I am getting to that point as well, in addition to a oncology radiologist.



spm58 in reply to bjorner3

He hasn't said anything to me about it. It just seems a lot of people are doing it. I basically have just been in contact with his nurse or assistant. When I've asked about chemo they say don't worry about that let's just do radiation.

bjorner3 in reply to spm58

sounds familiar. From what I have been told, radiation comes first. through this blog I am gathering that initial treatment for advanced PCa isn't just casodex or luupron for ADT (androgen deprivation therapy but another drug added shows great results. I need to ask that question to a med oncologist. Time to keep moving forward! Thanks!!


charmander in reply to bjorner3

I searched out a prostate cancer doctor,that I later learned was called a medical oncologist, as one of my second opinions and who came recommended. Prostate cancer is a specialty, particularly since each man can respond differently to meds and the cancer in his body acts differently despite having similar stats as another man. There is a trend now to add chemo early in the process to really knock back the cancer. Search this site for info. related to that. You may or may not be a candidate nor do I want to scare you in any way just trying to give you more information to work with.

Standard protocol seems to be prostate removal followed by radiation of varying frequency and duration. It was at this point in my path that I looked for second opinions as to next steps and kinds of treatment options. I ask lots of questions and do background information gathering. Just relying on one person's opinion did not seem enough for me. I wanted to be extra sure what was being prescribed was right for me and not just treatment plan that most men get.

bjorner3 in reply to charmander

Thanks I like that attitude. I will hook up with a med oncologist this week. Well - at least call for an appointment! What you say makes too much sense. There are many men on this journey and all have varied treatments so it is such a personal response and choice in treatment modalities.


spm58 in reply to charmander

This may be a dumb question but how do you search this site?

ctarleton in reply to spm58

Upper right corner.

spm58 in reply to bjorner3

I went independently. My urologist is a specialist in cancer though. So at my second opinion he said my dr is doing everything right so far. That at least gave me some encouragement


Hi sprn58 - welcome and sorry you are you. I had gleason of 10 at outset, age 65, prostate out da Vinci robotics, tumor stuff had fused to my rectum but so far not in rectum. first urologist missed this attachment, second which a friend referred me to caught it before surgery and said that changed his surgical approach and was important to know before surgery. pelvic lymph nodes were dissected during robotics. no lymph involvement or bone but seminal vessicles were involved so removed , stage T3b, have had extended pelvic area discomfort from surgery and now from injections of lupron. sitting gets uncomfortable but laying down doesn't take away discomfort - though better somewhat in morning after sleep, mass successfully peeled off of its attachment to my rectum. waiting to regain fuller continence (what my urologist wants) before I get radiation - external beam, five times a week for 8 weeks. am getting lupron shots every three months. i was psa 16 at time of diagnosis: 5.67 month after surgery, five weeks of casodex (then stopped) brought it down to 3.69, first lupron injection took it to 0.49, three months later it was back up to 0.99 while on second lupron injection, have had third lupron injection and back on daily casedex too. since i haven't had radiation yet I can't answer your question as per that. From following other posts on this website I would say we all react differently to treatment. Many others I have talked with out of this forum said radiation made them tired but not the kind of tired sleep helps. A good friend had 20 radiation treatments after his PCa radiation seed treatment still has his prostate and reported he played handball and drank beer every day during his radiation treatment. he is ten years out from diagnosis and under control. I hope you and I both have a favorable result after our radiation. keep moving forward, fight the fight , it is worth it!

By the way, my doc is David Samadi, MD located in new york. Have been satisfied extremely with his skills and demeanor.


spm58 in reply to bjorner3

Thankyou David! I hope yours goes well (and mine). I haven't even seen my surgeon since surgery. My follow up is mid sept. 2 months after surgery. He is highly recommended but not impressed with staff. I'm going to find another MO for treatment opinions.

In addressing the radiation question, I offer these thoughts. When I went through radiation therapy, I did it at 8:0am each day. There was a 3-4 hour lag time before treatment and starting to feel pretty tired. So I would take an early afternoon nap. If you do therapy as late in the afternoon as possible, you feel good each day when you wake up, and until late in the day after treatment. You're just tired when it hits you... the farther into therapy, the more it makes you tired. Second... Start drinking 24oz of water, at least, about 30 minutes to an hour before treatment begins! This extends the bladder fully, away from the rectal wall and helps greatly reduce the chance of damage to either from the radiation. Good luck!

to spm58 Re: Radiation

Two years after a RPD I had 39 sessions of radiation (MSKCC), my left side (5 days a week -mon to fri- for 8 weeks, minus 1 session, hence 39 sessions). I had no issues during and after the sessions, it was like taking an x-ray at the dentist. However years later during an MRI they noticed a stricture in my left urinary tract which was not giving me any problems. But I went to a Urologist anyway who for years was putting in and taking out a urinary stent. The stent in and out procedure was absolutely no pain or problem. Well my Urologist finally retired and I then went to a new one and we both agreed that the stent was not necessary, so I haven't had one for years. I guess I was a cash cow for my first urologist.

During a bladder Cystoscopy my Urologist could see damage done by the radiation.

During a Colonoscopy my Gastroenterologist noticed irritation due to radiation.

My point is that even though I didn't have any issues during my radiation sessions there's definitely collateral damage that I guess most doctors are not aware of. So ask questions!

Good Luck and Good Health.

j-o-h-n Monday 08/21/2017 1:52 PM EST (Solar Eclipse is here)

spm58 in reply to j-o-h-n

Thankyou and God Bless!

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