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Husband Diagnosed 2 months Ago

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Posted 10/4/2022 2:25 PM (GMT 0)
Thank you Sr Sailor.
Posted 10/4/2022 8:21 PM (GMT 0)
Pitgirl,

very sorry about the news but you're in good hands here; a lot of very knowledgeable people to guide you.

I also don't see the sense in surgery at this point. My therapy choice was SBRT ( Stereotactic Body Radiation Therapy) via the Cyberknife product (there are others) that shoots radiation beams from many different angles to lower damage to surrounding tissues. It was 5 one hour painless sessions over two weeks. Some minor soreness and urination issues for a couple weeks but after that no side effects at all after two years.

I don't know if it would cover the issues you mentioned about seminal and Intraductal vessels but I'm sure somebody will know.

My 2 cents.
Posted 10/4/2022 9:01 PM (GMT 0)
Pitfall, Welcome to Healingwell; it’s a great place for information and support. I’m just north of Pittsburgh (Butler) and like Vic Hardy I was very successfully treated with SBRT. When I was diagnosed I could not find anyone locally including Hillman using SBRT for PCa and I traveled to Cleveland Clinic for treatment. Your husbands diagnosis is different than mine or Vic’s. We were both low risk guys so I would rely on Hillman’s expertise. They are a great cancer center. I also believe that SBRT is an excellent treatment choice; however, for prostate cancer one size does not fit all. I’m glad to see you doing your homework and making a fully informed decision for your husband and yourself. My wife was a big help in our decision. Terry
Posted 10/5/2022 2:29 AM (GMT 0)
Nice to know someone is close by Terry.
Made me laugh when I saw that you called me pitfall. Story of my life!
Next Tuesday is our appointment with MO at Hillman with Dr. Mark’s group. Not sure what to expect from the visit but Dr. Marks is an excellent oncologist and has treated one of our friends so I believe we’re in good hands. Just not sure what he will suggest treatment wise.
Posted 10/5/2022 3:06 AM (GMT 0)
Pitgirl, Sometimes I hate spell check. Sorry. In any event I think you’re in good hands at Hillman. This forum introduced me to SBRT and for my situation is was the best choice. You may wish to investigate prostatecancerfree.org. I found it helpful especially in comparing the different treatment options by risk grade. You can uncheck some of the treatments to make the graphs a little easier to understand. Terry
Posted 10/6/2022 12:07 AM (GMT 0)
Don’t hate the spellcheck. Made me laugh. Hard to do these days.
So I spoke with the radiation oncologist today and he said they are planning IMRT and no brachytherapy. Do I need to get a second opinion at this point?
Posted 10/6/2022 1:12 AM (GMT 0)
Another good site for information
https://yananow.org/Links.shtml
This one along with healing well helped me tremendously
Posted 10/6/2022 1:20 AM (GMT 0)
Thank you. I’ll take a look.
Posted 10/6/2022 1:48 AM (GMT 0)
Pitgirl,

Welcome from the other end of PA--I'm in Philly area. I'm glad you've been looking at your options, and covered many bases. It sounds like you're settling in to a treatment plan from a well established center. Getting introduced to this is so messy and confusing, there are so many options and so much to learn that it's like drinking from a fire hose.

Now comes the slog. I'm assuming 40 or so sessions of IMRT. The hormone therapy--I've not had it--is another slog. Make sure he keeps eating healthy, and exercising as much as he can, it will help with the lethargy and weight gain.

The good news is--there is a lot of hope. Chances are, he'll be around to drive you crazy for a good many years to come.
Posted 10/6/2022 3:24 AM (GMT 0)
Pitgirl…Your husband is in the high risk group with Gleason 8 and his PSA is in the fifty range. The ADT should help slow down progression immediately. In my opinion that gives you time to get a second opinion on which radiation options have the best chance of success and a total cure. You want this first choice at treatment to be a home run. When I looked at prostatecancerfree with your husbands numbers I would be going with a combination of both internal (HBRT or BT) and external (EBRT) radiation. In Pittsburgh we have UPMC and AHN and Cleveland is not much more than a couple hours away. Lot’s of expertise and you maybe able to do virtual visits. When I went to CCI for a second opinion they requested I bring my biopsy slides with me and they had two different RO’s review them. Keep in mind I have no medical training (unless you count being married to a nurse) and was a low volume Gleason 6 more frightened by the infection risk of additional biopsies (having three recent joint replacements) than I was of radiation treatment. Surgery for me was simply out of the question even though my Urologist recommended it. That second opinion probably changed my life for the better. Keep us posted.
Posted 10/7/2022 1:01 AM (GMT 0)
Thank you Terry and Halbert. I will talk with my husband about a second opinion. He doesn’t seem to think he needs one but somehow I have to get him to agree.
Posted 10/14/2022 2:06 AM (GMT 0)
Saw MO at Hillman on Tuesday. She wantS so start Lupron injection next week and ordered xytiga. Lupron every 3 months for 2 years along with the zytiga.
Also ordered a dexa scan and scheduled the MRI. Don’t have a definite date to begin radiation yet. RO wants the MRI before starting. First available appt for MRI is nov 14.
Any thoughts on Lupron and xytiga? Reading through some of the posts I’m terrified about side effects.
Posted 10/14/2022 2:55 AM (GMT 0)
You'll get lots of responses re Lupron since many of us here did our time on it. It's a bit of a slog since it reduces your testosterone to zero (more or less) so that can zap your energy (not to mention crush your libido) and you just feel a bit off. I had lots of hot flashes, which is pretty typical and were quite bothersome.

That said, it's manageable and you just have to plow through it. I had Zytiga added after a few months and I personally didn't see a significant change in side effects. Zytiga is given in conjunction with a steroid, so that's another thing to keep in mind. But it is by no means, terrifying. I went to work, ran a business and went on with my life. Exercise helps.

Regarding the other steps, such as the MRI, that's pretty typical before starting radiation. So it's IMRT as a mono therapy for your husband?
Posted 10/14/2022 3:03 AM (GMT 0)
Pitgirl,
I think you mean Zytiga, but maybe Xtandi? It doesn't matter much. Both drugs are "novel" anti-androgens. Sometimes the forum also refers to them as 2nd generation ADT. Either drug will do the job. The last few years these drugs have been used in combination with Lupron to significantly improve outcomes. More recently they have been included with radiation treatment as well. All good stuff.

The delay for the scan is no problem. It will give the ADT (hormone therapy) a chance to weaken the cancer cells prior to RT. The ADT will almost certainly stop the cancer from further spread. So, no worries.

I think 2 years is a good idea. It seems like forever on ADT, but the time will go by soon enough.
Posted 10/14/2022 4:02 AM (GMT 0)
PS,
Sometimes starting ADT too far in advance of a scan can affect the outcome of a scan because the tumor/s can reduce in size. I don't know how that might apply to an MRI or to your husband's situation.. Hopefully the RO knows your husband will be starting ADT soon.
Posted 10/14/2022 1:41 PM (GMT 0)
If it is Zytiga, they will need to monitor his liver function, At about 6 weeks on Zytiga, I was told to stop using Zytiga,. My liver quickly recovered and they switched me to Erleada. Dr. Sartor told me the liver reaction was rare.
Posted 10/14/2022 1:58 PM (GMT 0)
Thank you for the replies. Made me feel a bit better. Yes, Zytiga is the drug. Apparently I need to copy/paste more often.
The RO does work closely with the MO so I’m sure she advised him that ADT has begun.
Still can’t talk my husband into getting a second opinion. I’ll keep working on that in the upcoming few weeks.
Again thanks for the replies.
Posted 10/14/2022 3:11 PM (GMT 0)
I wish you luck in convincing your husband to get a second opinion. My wife tried unsuccessfully to get me to get a second opinion after I was originally diagnosed. I regret that I didn’t listen to her.
Posted 10/14/2022 4:25 PM (GMT 0)

Pitgirl said...

Still can’t talk my husband into getting a second opinion. I’ll keep working on that in the upcoming few weeks.

Pitgirl,
Another perspective is that your husband has "made his decision." The good news is that he has selected a tried and true treatment that is as effective as any other treatment, and most probably will be low on nasty side-effects.

Energy can be saved and used for your outstanding support to continue for the next two years.
Posted 10/14/2022 11:42 PM (GMT 0)
He will always have my undying support Mattman. Thank you for yours. ❤️
Posted 10/24/2022 1:31 PM (GMT 0)
Hang in there. I had bracytherapy and external beam, psa 57 gleason 7. On completion Bicalutamida followed by injection every 6 months of Eligard semestral when completed the pills, psa dropped to 0.02, Then after 4 years started on daily Erleada (apalutamide tablets) are androgen receptor inhibitors indicated for the treatment of patients with non-metastatic castration-resistant prostate cancer. Plus 3 monthly injections. Scans every few months.
2 small spots appeared on clavicle and side of D3 PSA rose to 3.4. Radiation treatment and PSA dropped to <0.1 since. Last scan was 100% clear. Always keep ahead. Drink less and stay off sugar. Age 69. New drug Pluvicto showing remarkable results.

Post Edited (compaid) : 10/24/2022 6:48:55 AM (GMT-7)

Posted 10/24/2022 2:09 PM (GMT 0)
I was on that med for 2 years. Side effects were constipation and upset stomach requiring Pepcid.
Posted 10/24/2022 4:38 PM (GMT 0)
Pitgirl, Just wondering if any discussion was made about injecting SPACEOAR Hydrogel to protect your husbands rectum during the IMRT treatments? It hasn’t been discussed much here recently. I have a neighbor friend who had the same IMRT treatment I had without SPACEOAR and has suffered radiation SEs to his bowels everyday since. I have had no SEs to my bowels, except for a few minor ones during the treatments. My RO did the injection the same time he placed the fiducial markers. It was all pretty much painless and I do believe it has helped a great deal. I am now almost a year out from the IMRT treatments with only the SEs from ADT. Thank you for being such a great advocate for your husband. My wife, having had breast cancer treatments a couple of months before my DX has been my shining light to keep me motivated. My best to you and all,
Jack
Posted 10/24/2022 8:40 PM (GMT 0)
Thank you Jack. I wrote this down to discuss during our next visit with the RO. I do remember reading that somewhere but totally forgot about it. Again thanks for the reminder.
How difficult of a time that must have been with both of you going through cancer treatment. Bless you both. I’ve been putting off my annual mammogram because I’m not sure I’d have the strength to cope with something going wrong on my end. I’ll get it done though. Most likely after my husband’s radiation is completed.
Posted 10/24/2022 8:57 PM (GMT 0)

compaid said...
Hang in there. I had bracytherapy and external beam, psa 57 gleason 7. On completion Bicalutamida followed by injection every 6 months of Eligard semestral when completed the pills, psa dropped to 0.02, Then after 4 years started on daily Erleada (apalutamide tablets) are androgen receptor inhibitors indicated for the treatment of patients with non-metastatic castration-resistant prostate cancer. Plus 3 monthly injections. Scans every few months.
2 small spots appeared on clavicle and side of D3 PSA rose to 3.4. Radiation treatment and PSA dropped to <0.1 since. Last scan was 100% clear. Always keep ahead. Drink less and stay off sugar. Age 69. New drug Pluvicto showing remarkable results.

Thank you. I was wondering about my husband drinking wine. 1 glass 3-4 times a week with dinner. Does he need to stop that?
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