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Husband just diagnosed - just wondering

dasspears
Posts: 233
Joined: Feb 2009

My husband was just diagnosed with Stage I prostate cancer. PSA is 4.9 and Gleason score is 6. After meeting with urological surgeon and urology oncologist, he has decided to go with the IMRT treatment.

I'm a member of the Anal Cancer and Colorectal Cancer discussion board here. I had Stage I anal cancer and I had the IMRT treatments. I know how I was affected by the radiation so I was curious what side effects those with prostate cancer so chose IMRT had. And continue to have.

Any information would be greatly appreciated and most helpful.

Swingshiftworker
Posts: 620
Joined: Mar 2010

Welcome to the PCa Forum!

Sorry to hear about your husband's and your cancer problems but there are a lot of men here to hopefully can provide you with the support and information you both need.

The typical side effects of IMRT w/PCa are increased urinary frequency or incontinence and potential rectal, urinary or bladder damage, which are pretty much the same for all other forms of radiation treatment. The only difference in side effects between treatments is the degree of risk.

There have been several recent threads discussing the effects of IMRT w/and w/o other treatments (brachytheapy (BT), chemotherapy and hormones). The effects vary depending on the stage and other factors. To find the threads, such do a simple content search using "IMRT" as the keyword.

However, if your husband is only Stage 1 (T1) w/a Gleason 6 and PSA 4.9, which are pretty common stats for member here (including me w/early stage PCa), he may also want to consider CyberKnife (as I and other members here have done) or another form of SBRT (stereotactic body radiation therapy) which delivers radiation more accurately than IMRT and also requires fewer treatments (only 4 or 5).

The side effects of CyberKnife are minimal when compared with all other currently used forms of radiation treatment (IMRT, EBRT & BT) and similiar to those experienced with PBT (proton beam therapy) but (like IMRT) PBT requires many more treatment sessions (40-45) than CK and IMHO is preferable as a result. However, there are many men here (and elsewhere) who have received PBT and highly recommend it.

You and your husband still have time to do a little more research and to consider other treatment options, if you like. So, I'd suggest you investigate both CK and PBT as alternatives to IMRT to make sure that IMRT is the best treatment for your husband.
Good luck!!!!

mrspjd
Posts: 688
Joined: Apr 2010

Hello and welcome to the PCa forum, from one PCa wife to another. Sorry to read of your cancer battle and that you now are having to contend with it again, this time with your husband's PCa dx. My husband, PJD, was dx last Feb 2010, low PSA and, initially a T2, & also a Gleason 6. However, he sent his biopsy lab slides out for a second opinion to a well-known, well-respected pathology lab, such as Johns-Hopkins, and it came back downgraded (higher risk) to a 3+4=7, which lead to further diagnostic testing in order to more accurately stage the PCa, finally determining the stage to be T3 & locally advanced. I strongly recommend that you consider doing the same, as second opinions on the biopsy may influence the treatment choice and/or the tx plan, as it did in PJD's case. It would also be helpful to know the add'l stats from the 1st read on your husband's biopsy, such as # of cores positive and % of cores positive.

To treat his high volume, locally advanced T3 PCa, PJD choose a combination approach of ADT (hormones), HDR-B (high dose rate brachytherapy which is a temporary brachy tx), and IMRT. In regard to your question about the IMRT: He experienced minor urinary/bowel frequency which resolved after about a week. Also, due to the combination of the other txs (hormones & HDR-B), he seemed to be more fatigued. However, that too resolved quickly. He completed all his RT txs last Oct 2010, and has recently discontinued hormone therapy after 9 mos on the drugs, well tolerated. His PSA, testosterone, etc. numbers were stable and were where his doctors, including an oncologist specializing in PCa, felt they should be. I am happy to report PJD is doing very well, has no lingering tx side effects, & is back to an active, healthy lifestyle and diet. He will continue to be monitored closely with PSA & add'l blood work.

I would guess that you might have experienced some of the same type of side effects, such as fatigue and urinary and/or bowel frequency, from your own IMRT txs for cancer. Hopefully they were temporary and resolved quickly. If you should have any add'l questions, please ask away--questions are encouraged. Everyone on the forum has something to share, whether first hand from the patient himself or, second hand, from the wife, partner or other family member.

Wishing you and your husband all the best,
mrs pjd

ncobjim
Posts: 35
Joined: Nov 2010

Diagnosed in 2006 with Stage III PC Gleason 4.8
Had RP in 2006. PSA 0.05 After operation.
Stayed at that till 2009. Went to .1 then .2 to .4 PSA.
Had 38 IMRT treatments ending Set. 2010. With 6 month HT treatment.
Other than minor bowel soreness i had no real issues with the IMRT.
All went really well & therapists were great.
PSA was 0.04 after 5 weeks. Tested again in March.
Still no side effects that i know of to this date.
Good luck!

Julietinthewoods
Posts: 15
Joined: Dec 2010

I'm sorry you and your husband have to go through cancer treatment again, but I wanted to give you a tiny bit of hope. Apparently, side effects vary from person to person, but my husband had none.

He was a Gleason 7, Stage T1-C. He elected to undergo nine weeks of IMRT with gold fiducial markers. He still says that the two biopsies were the worst part of the whole business. He worked every day during treatment, with no fatigue and no bladder or bowel issues. In fact, at one point he told me he felt better during the treatment period than before! A day or so after the 45 sessions ended, we noticed a red 'burn' area on his backside. He said it never hurt, and it was pretty much gone in a couple of weeks.

At this point, he is so grateful to have experienced such an easy course of treatment. The real test will come with the first PSA test in April, but right now he is just relieved and relaxed.

Wishing your husband an easy go of it as well!

Juliet

VascodaGama's picture
VascodaGama
Posts: 1517
Joined: Nov 2010

In this booklet named “Intensity Modulated Radiation Therapy (IMRT) And You”, you can find a description of symptoms from possible side effects, with hints on what to do. I recommend you reading page 21;
http://www.california-impact.org/documents/IMRTyou.pdf

In these sites you have several comparisons between treatments and a reasonable understanding of requirements for each treatment;
http://www.prostate-cancer.com/radiation/side-effects/radiation-side-effects.html
http://www.prostate-cancer.com/radiation/patient-profile/radiation-patient-profile.html
http://www.prostate-cancer.com/radiation/treatment-description/radiation-description.html

I wish the best to your husband.
Vgama

RADIATION HOPEFUL
Posts: 206
Joined: Dec 2010

Hello Juliet

I also had the three markers placed in the prostrate,had bone scan & cat scan--no metastasis present--my original PSA was 55 with a gleason score of 9. The urologist gave two options--surgery or radiation & if I chose surgery, I would still need radiation.
I'm very interested in your case & the end result. Do you know what dose of radiation he received? I'm getting 180centigrey a day for 44 treatments. (25 will be wide beam to cover the lymph nodes & seminal vesicles-the last 19 will concentrate on the prostrate only. SO far I have had 16 broad beam treatments & no serious side affects. My E-mail address is Nakooma923@verizon.net if you wish to send a memo. Many on this site will be watching for the result in April thus please keep posting. Vgama gave some good advice & is very knowledgeable about what treatments entail. I live in Pensylvania & relaying my personal experience . Very happy to hear your husband is pleased with his treatments.
Rad Hopeful

dasspears
Posts: 233
Joined: Feb 2009

I so appreciate your quick and thorough replies. This is an awesome board! I'm going to suggest my husband come here and read your posts.

My husband was a wonderful caregiver during my treatments - I had chemo twice and 6 weeks of radiation. I'm happy now to do the same for him. Having gone through the cancer diagnosis once and reading everything we could find, we fortunately have some knowledge about cancer. Never the less, as you all know, when the diagnosis is spoken, your world still turns upside down. I will pass along all of the suggestions given and we will speak with his oncologist.

Stay tuned.........

Klemon
Posts: 26
Joined: Jun 2010

Hi There~
From one wife to another, I can relate to all of the questions about which direction to go for treatment. I can say that prostate cancer is a tricky one. My husband had rising PSA in 2008 (4.5), biopsy negative, 2009 (6.1), biopsy negative, and 2010 (8.2)- biopsy positive 1 core at 3-3=6 and told we had all the options and all kinds of time to decide. We decided on the DaVinci robotic surgery and went to Mayo in Rochester as our own doctor had gone there and they say that they treat more prostate cancer there than anywhere in the world. They wanted to do a saturation biopsy because their pathologists read the biopsy results from home as precancerous (we had 7 patholigists from three labs look and none agreed) The saturation biopsy revealed numerous positive cores and some up graded to 3+4=7 and 4+4=8. That bought us a surgery date within 6 weeks instead of 6 months.
The good news is at surgery, they re-path the entire prostate and look at the overall volume of cancer and cells for the entire thing...and he was downgraded to 3+4=7 at stage 2- since it was on both sides of the prostate. You don't get a true pic of what you are dealing with unless they remove it and grade the entire thing
The traditional biopsies take such a small sample (the size of a hair follical) its really a shot in the dark trying to find it...and prostate cancer cells don't differ from regular prostate cancer cells much... My husbands physical exams were all normal, no symptoms, MRI CT scans all normal.
He is 64 and had the surgery in July 2010. He also had an extended pelvic lymph node dissesction where they take all the pelvic lymph nodes to ensure if any micrometastises have occurred, they are removed.... All were negative and PSA has been undetectable since.
I asked why in the world we did not find it sooner since we were so on top of things.. (ultimately the tumor size was 3 cm x 1 cm x 1 cm) They simply told us its really tricky to hit the area its hiding in with the punch biopsies.
On another note, after surgery, my husband had basically little to no problems with incontinence except a bit of stress leaking (a drop or two) during heavy lifting of sexual activity-for only about 3 months.) no pads, no diapers, none of that. He had complete bladder control the minute the catheter was removed.. Sexual function is returning- starting at 4 weeks and continuing to improve. He has been able to have full intercourse since the 5 week mark. The recovery was simple, walking a mile at 10 days, back to work at 10 days...walking increasing to 4 miles per day by 2 weeks and back on horseback competing in roping events at 5 weeks.
I know there are alot of options out there.. I just wanted to share our story, since we were so on top of things, but as it turned out, had a more serious situation than was originally thought. We are a medical family and believe that sometimes more than one opinion is a good way to go.
I have heard good and bad about radiation options..seeds, etc.. I think that there are alot of avenues to take, you just have to decide which is best for you. I can tell you that surgeons recc surgery, oncologists often recc raditation and other non surgical forms of treatment. We had an amazing experince at the Mayo Clinic in Rochester.

Julietinthewoods
Posts: 15
Joined: Dec 2010

Radiation Hopeful,

My husband received, in total, 81 greys. The dose was determined based on his Gleason score of 7 and prostate size. The margins were radiated as well. We felt like radiation was the best choice for him, due partly out of a strong desire to avoid surgery. Based on the information you have given, it sounds like you made a good choice as well.

His experience at the clinic was all positive. The techs were considerate and helpful. I think he had to adjust to not seeing them every day after going there for nine weeks! I hope your experience will be as calm and encouraging.

I will definitely post and let you know the result in April. I am worried about it, but he doesn't seem to be. His mind is back on work, and I spend time online reading up and trying to understand what will come next!

Good luck to you!

Juliet

RADIATION HOPEFUL
Posts: 206
Joined: Dec 2010

Juliet

Thank you for the reply & you did answer some questions -(I have a few others -hope you don't mind)
Did your husband have to drink water before every treatment? Did he have to drive far? I assume they used the Varian machine?
Did he have bi-weekly blood monitoring of complete blood counts? Did he have broad beam & cone shaped treatments? (I'm having 25 broad beam covering the entire pelvic region & 19 cone shaped to the prostrate only)

Appears our dose of radiation is similar I sincerely hope his PSA tests come back very low.
Thanks again for the reply & I also wish good luck & blessings to all afflicted with this disease.

Rad Hopeful

Julietinthewoods
Posts: 15
Joined: Dec 2010

Yes, he did drink water....12 oz. about 1/2 hour prior to each treatment. He usually drank the water, then set out for the clinic, which was only about 20 minutes away.

He was not treated with Rapid Arc. There are no facilities nearby using the Varian equipment, and one of his main considerations was proximity to work. This whole ordeal began at a time when it was crucial for him, career-wise, to maintain a strong presence at the office. I was not convinced, based on my research, that the Rapid Arc treatment offered enough advantage to offset the potential risk to his employment which would have resulted from travel. Otherwise, I think it sounds great.

He did not have any blood work done at all. I assume your blood monitoring is done with regard to your hormone therapy. His doctors did not feel it was necessary for him....yet.

He only received radiation to the prostate and margins.

Hope this helps!

Juliet

RADIATION HOPEFUL
Posts: 206
Joined: Dec 2010

Thank you Juliet for the reply

I apologize if I'm asking too many questions on this post board.

I was told the bi-weekly blood monitoring (CBC) is to monitor the red/white blood cell count. We don't want anemia or diabetis to enter the picture. The water drink was to move the bladder away from the radiation area.
Appreciate your reply & look forward to future posts showing positive results.
Bless you, your husband & everyone else affected with this disease.
.

Cordially
Rad Hopeful

142
Posts: 169
Joined: Dec 2009

I had IGRT as adjuvant to my DaVinci surgery, so only 39 sessions.

Water - yes, 500ml 35-40 minutes before treatment.

Blood tests - none specifically for the IGRT. I did have two sets of general blood tests (1 a few weeks before starting, another at the end) just because I was monitoring another problem with my GP. I did have a drastic fall in both white and red blood cell counts, but the GP said that was very normal and expected, and would come back over the next 6 months - 1 year. At four months after, the counts were back up, still not to minimums but up some. The GP forbade me to go to public / crowded / closed places during the sessions. The therapist didn't seem to think it was an issue, butm the GP did.

Side effects - yes. Increased frequency of urination, increased and softer bowels, extreme fatigue (I was dead on the couch by 6pm if I didn't take a nap at noon).

kmkirlin
Posts: 2
Joined: Mar 2011

Sorry for the late feedback. I just joined the forum shortly after having surgery. My suggestions:

1) Look for a major medical and research center near you with an excellent reputation for prostate cancer treatment. E.G.: Johns Hopkins in Baltimore; Cleveland Clinic in Cleveland and elsewhere; Mayo Clinic in Minnesota and elsewhere; Memorial Sloan-Kettering Cancer Center in NYC; M.D. Anderson in Houston, etc. U.S. News & World Report ranks these centers here for cancer:

http://health.usnews.com/best-hospitals/rankings/cancer

and here for urology:

http://health.usnews.com/best-hospitals/rankings/urology

These rankings are not the only thing you should rely upon, but they're a good start. Find out whether your husband's health insurance will cover one of them.

2) Your husband (and you) should decide early on if preserving his erectile function is a high priority. If it is, you should communicate that priority clearly to the surgeons or other specialists you consult. Whether or not he places a high priority on continued erectile function, you should buy and thoroughly read the book "Saving Your Sex Life: A Guide for Men With Prostate Cancer," (available on Amazon) by Dr. John Mulhall, who is Director of the Sexual and Reproductive Medicine Program, Division of Urology, Memorial Sloan-Kettering Cancer Center, in New York. It is the single best resource I found for understanding the diagnostic and treatment options for prostate cancer, as well as their consequences and side effects. It will help you immensely in asking intelligent questions of treating surgeons, radiation oncologists and others.

3) Ask whoever your husband sees if they will perform an MRI with endorectal coil as a further diagnostic procedure before deciding on treatment. This is a non-invasive (but uncomfortable) procedure because they put the endorectal coil up your rectum to allow them to get a high quality MRI image of the prostate and seminal vesicles. It is not infallible, but it is an excellent diagnostic tool. If I were your husband, I would want to exhaust all reasonable non-invasive diagnostic procedures before I decided on surgery, radiation, hormone therapy, etc. Both can have drastic side effects upon sexual function, among other things.

4) Don't get hung up on robotic vs. open surgery. The success of a procedure has much more to do with the surgeon's skill and experience than with the technology they use. When you meet with your husband's prospective surgeons, ask them how many times they've done the recommended procedure, in total and in each of the past five years. And ask them for percentages on successful vs. unsuccessful outcomes, and on side effects (impotency; incontinence, etc.) If they're shy or unwilling to discuss this, go elsewhere. Ask them how much of the procedure they do and how much is done by their residents/surgical fellows, etc. The general rule is that a surgeon doesn't get fully competent at a procedure until they've done it at least 200 times. Even then some will get a lot better with experience and some never will. A surgeon whose done an open prostatectomy thousands of times is more likely to have good outcomes than a surgeon whose only done a robotic procedure a few hundred times.

5) If radiation is recommended, hormone therapy is often recommended as an adjuvant therapy. Hormone therapy can have a big effect on your husband's libido and overall state of mind. If hormone therapy lasts longer than 6 months, there is a significant risk that the side effects may become permanent. There are wide differences between the amount and length of hormone therapy at different hospitals. One radiation oncologist recommended that I have hormone therapy for three years before and after IMRT therapy; another radiation oncologist recommended six months of hormone therapy before and after IMRT therapy.

Good luck.

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