Overwhelmed with my proposed treatment plan

rjrsmnyc

Hi everyone,

I had an appointment yesterday with a radiation oncologist to go over the treatment plan for my prostate cancer. I’m very grateful my spouse was with me—it was a lot to take in. I have a Gleason 9 diagnosis, and while the cancer is still contained within the prostate, the recommended treatment is androgen deprivation therapy (ADT) followed by 28 sessions of radiation.

During the appointment, I was trying to stay focused, but all I could really absorb was “several weeks of hormone therapy” and “28 sessions of radiation.” Surgery isn’t an option for me because of my age, and I’m not a candidate for brachytherapy due to the location of one lesion near the urethra.

At first, I felt somewhat okay leaving the doctor’s office. But later in the evening—and especially this morning—the emotional weight of it all hit me hard. My mind keeps going back to the possible side effects of ADT and how this is going to change my daily life. It honestly feels like a ton of bricks landed on me overnight.

I know others have been down this road, and I’d really appreciate hearing how you coped—emotionally and physically—with this kind of treatment plan. What helped you get through it? What do you wish you’d known going in?

Thanks in advance. Just knowing I’m not alone in this would mean a lot.

Clevelandguy

Hi,

Have you looked into something like Cyberknife? The duration of the treatment is usually 1-2 weeks with only a handful of treatments. Cyberknife(SBRT type) has been around for a while and is a very good treatment. ADT can be rough, make sure you choose one that has the mildest side effects, there are some newer ones out on the market. Some are in pill form so if the side effects become too severe you at least have control of the dosage. ADT drugs will not kill the cancer but weaken it so the radiation is more effective. Protect your bladder and rectum with SpacOr gel and hydrating before each session, your doctors will advise. A second opinion from a different set of doctors/hospital network might not be a bad idea.

I have included a link for you to study:

https://www.cancer.gov/types/prostate/prostate-hormone-therapy-fact-sheet

Dave 3+4

Old Salt

Yes, patients on this and other prostate cancer forums complain a lot about 'hormone therapy', but the effects vary a lot. Yes, you won't be your old self anymore for a number of months, but it is possible to counteract the effects. There's a lot one can do; mostly exercise. Recovery typically is better in younger age groups.

I am not fond of reports of personal experiences, but I had 18 months of 'hormone' therapy (multiple Gleason 9 lesions) combined with radiation therapy. My testosterone (T) went down to castrate level (as it's supposed to) but it recovered afterwards. I was in my mid seventies at the time.

PS: With respect to Dave's post, my therapy included two kinds of radiation; SBRT (on a Cyberknife instrument) was one of them. SBRT by itself is less successful for Gleason 9 patients. In my case, it was combined with multiple IMRT sessions.

As always, find a radiation oncologist and facility with LOTS of experience.

PS#2: It's perfectly normal to feel overwhelmed. We all were at one time or another. In due time, and after becoming more familiar with the specifics of your prostate cancer, you will find a way out.

swl1956

Hi rjrsmnyc

Yes, you are not alone and it can be very overwhelming. In my case, once I made a choice of treatment my stress level abated considerably. At 68 I just finished 40 sessions of IMRT and have been on ADT (Orgovyx and Zytiga) for about 3 months now. As Dave 3+4 suggests, I felt the pill medications was a better choice than the shots in case a dosage adjustment is necessary and quicker recovery than associated with Lupron injections. I haven't had much in the way of side effects from the ADT except for occasional hot flashes. The ADT will definitely shut down your libido, but I don't view that as that big a deal. Because my Pca had metastasized to a couple of lymph nodes they want me to stay on ADT for 2 years. I think staying active is helping me. I walk everyday (weather permitting) about 3 miles and do some calisthenics as well. As far as the radiation treatments, they were fairly easy to endure, however the logistics of getting there everyday and keeping my bladder adequately full before each session without pissing myself was somewhat stressful. After IMRT I am now experiencing some minor urinary and bowel frequency / urgency issues. My doctor claims that will improve over the next several weeks. Anyhow, all in all not that bad of a journey so far. There are far worse situations others are enduring and there are many tools available to treat Pca. I found that dealing with a high volume cancer center of excellence also reduced my stress in comparison to my local healthcare where I started my journey. Hang in there! You'll get through it and hopefully with a great outcome.

centralPA

Just wanted to say, you feel like a ton of bricks landed on you, because a ton of bricks landed on you. It’s ok to be overwhelmed initially. Be kind to yourself!

rjrsmnyc

https://csn.cancer.org/discussion/comment/1722583#Comment_1722583

Yesterday, I was so bummed out, and to compound it all came down with a head cold. But today, something changed because of people like you who have been supportive. What changed? My attitude, now its all fight.

Marlon

You have a plan. That's progress. I am 10 months post-surgery, and I still occasionally think the "why me?" question. But you have to choose life. And help others by reporting back here of your experience.