Time to pick which fork in road to follow

Well sorry you have to get some help. I had surgery in the medical center in Houston from a top recognized surgeon. Eight years later I had SRT at M.D. Anderson. SRT for me was a nothing burger. I can’t stress enough the importance of going to a nationally recognized prostate cancer center like M D Anderson. They are years ahead of most neighborhood doctors. Until you have been to the HOUSTON medical center, you can not imagine the magnitude of the individual facilities. You don’t need to “grill” any of the doctors here- they would not be here if they were not at the top of their fields. They will be there to answer your questions, but much more importantly, they are here to treat you. People come from all over the world, even OKC, to be treated - and cured! 250,000 people work in the HOUSTON medical center. Money well spent for sure. Come on down, trust trust your doctors, rest in the assurance they know what they are doing and let them help you.

My next URO appointment is tomorrow afternoon and I have another appointment with the RO on Aug 13th. In the process of setting up a second opinion with OU's Stephenson Cancer Center soon as they get my records.
Then I need to decide if MD Anderson is going to be something to tackle.
I will ask my new URO how follow up treatment will work if I go out of state for primary care.
I am double insured through Bluecross with my employer and Aetna through my wifes employer so I think I am ok insurance wise.
I have plenty of paid time off built up so that's not to much of an issue just dog, house etc to worry about while I am gone.
I figure if I go the surgery route at MD Anderson it will probably be a 2 week stay ?
Radiation treatment is another issue so far away from home because of days and weeks it might require treatment depending one which kind.
My heart is telling me to quit screwing around and just head to Houston but my mind is having trouble wrapping itself around everything it will take to do that.

As you are probably aware, RT can involve from 1 session (seeds) to 44 (proton). But, there have been study results for both IMRT and PBT that halved the sessions without compromising the outcomes. There have even been clinical trials of five-session SBRT using protons. I have read posts from men who had no issues with that.

So, if travel and time are major factors for you, try to be as informed as possible to the different protocols, trials, and ultra-hypofractionation that are becoming increasingly available.

Regarding traveling for treatment, after diagnosis and making the decision for surgery, I talked to one one my running partners, a doctor himself who had gone through this a year before, and he said that you really want someone who has done 1000s of them, which is why he went to Utah from Montana.

I did my homework and found that there were lots of places to choose from but decided on Cleveland Clinic, partially because I'd never been to Cleveland and wanted a chance to visit that area. As it turns out, my local uro did her training there and hooked me up with the doc she considered the best.

I made 2 trips. One for a consultation, more because I wanted to meet the doctor and get a feel for the facility, and, the second for the surgery. On that first trip I made it a mini-vacation and my son, who lives 2 hours away joined me and we had a great time.

My wife accompanied me for the 2nd trip and we stayed in a nearby hotel that had shuttle service to the hospital. I stayed there for about 10 days total, flying back after the catheter came out. Staying in a hotel wasn't as convenient as staying at home but we made an adventure out of it and it wasn't too bad.

Insurance covered everything except travel and lodgings so that might be an issue for some.

A good question to ask your Uro tomorrow--"If I choose to get treated at (X) that is some distance away, will you manage my post-treatment care?" Some will, some would prefer not to. It's ok either way.

If you do surgery, yeah, they will send you home 24 hours after you wake up in PACU. With catheter and incision care instructions. Make sure you have someone to do the driving for you.

For radiation, it really depends on the treatment you choose. One of the reasons I chose against external beam was the 40 visits--I would have had 4 hours of driving daily for the treatments. Just no. SBRT is 5 treatments over a 2 week period. LD Brachy is a single visit to insert the seeds--and a pre-treatment visit or two. HD Brachy is 2 visits a short time apart.

Blackjack said...
Generally, men who have jobs where they "go into the office" or have other jobs where they engage with the public or clients will stay out of work for about a month; men who "work from home" or have other more remote jobs often are back "on the job" in a couple days.

You're more optimistic on recovery time than me Blackjack It's almost creepy how the anesthesia affects your thinking/processing. I know I thought I was ok at the time, but it was only later, I realized I wasn't running on all cylinders. For me it was at least a week mentally ... probably 2 weeks.

Regarding side effects--continence and ED particularly--it truly is a crapshoot. There seem to be a minimum of 3 factors involved that are determined during the surgery, and others that seem to be random.

The 'big 3', and this is not based on any serious delving into the data, but on listening and reading many comments here look to be: First, what is the cancer actually doing inside you? Sometimes (like Old Beek and others) the cancer is surrounding the nerves, and they need to be removed. That ends the sexual game (most of the time--there is one guy who says he lost both nerves and has no issues, go figure). Second, your individual anatomy--sometimes, even with apparently good nerve sparing work, things just don't ever recover. It happens. It's not predictable, it's not even possible to explain it. Third, there are random surgical events that happen (this is where experience comes in). Things get nicked, bruised, etc. Sometimes it's not even visible or known.

Add to that your pre-surgical condition. Face it, at the time of RALP, none of us are or were the studs we thought we were at 18. Admit it. My surgeon, when asked that question, asked me seriously where I would put myself on a 0-10 scale compared to my youth. And then he said this: Wherever you truthfully are now, you will probably move down at least 1 step, if not 2 or 3. And, he was right. In my case, daily low dose cialis takes care of it, no problems at all. Be honest about where you are. Ask yourself, if the worst case happens, will I be able to deal with it? Am I OK with moving down the 0-10 scale 1, 2, 3 steps? The worst case could happen--statistically it's not all that common--but being informed means it CAN..

oldbeek said...
Sex has not been discussed. If sex is important to you, surgery may end it. My URO said I may need Cialis after the RP. I went to City of Hope, a major cancer hospital in Los Angeles. The URO said I had cancer spread to my nerves and he removed all of them. He did get all the cancer. Two years down the road I still leak. I have had an implant. That is the last resort so think can solve the sex problem. I have so little sensitivity in my penis that an orgasim is nearly impossible. There is NO subsitute for a natural blood filled erection.

Married 35 years and we have a great sex life now and am trying to come to grips with a good chance that will be over by the end of this year, scary for both of us indeed. I want the cancer gone of course, worry about the cure first they say and I agree but the SE are hard to get past which is why radiation seems like a better choice up front but then the worry and stress will kick in for how long before the same SE are front and center.
I have more dr appointments coming and hopefully some clarity will emerge but right now I am kind of in a fog.

GTO Guy said...

oldbeek said...
Sex has not been discussed. If sex is important to you, surgery may end it. My URO said I may need Cialis after the RP. I went to City of Hope, a major cancer hospital in Los Angeles. The URO said I had cancer spread to my nerves and he removed all of them. He did get all the cancer. Two years down the road I still leak. I have had an implant. That is the last resort so think can solve the sex problem. I have so little sensitivity in my penis that an orgasim is nearly impossible. There is NO subsitute for a natural blood filled erection.

Married 35 years and we have a great sex life now and am trying to come to grips with a good chance that will be over by the end of this year, scary for both of us indeed. I want the cancer gone of course, worry about the cure first they say and I agree but the SE are hard to get past which is why radiation seems like a better choice up front but then the worry and stress will kick in for how long before the same SE are front and center.
I have more dr appointments coming and hopefully some clarity will emerge but right now I am kind of in a fog.

your sex life will change. how much is the question. i'm in my ninth year of remission and I had tons of radiation. I can have sex with the aid of Cialis and it ain't bad. still waiting for those long term radiation side effects to kick in, and there isn't a day that goes by that i'm grateful my uro steered me away from surgery which he believed would require SRT smile

GTO Guy, it makes sense to consult with a center of excellence as you are doing. It's smart to do your homework and get this right. Please remember that when you consult with a "radiation" person anywhere it is not necessarily true that the individual will have thorough knowledge of all forms of modern radiation, i.e. SBRT, LDR Brachy, HDR Brachy and IMRT. The point being that you may have to consult further with experts in several radiation fields to get comfortable with a choice.

Having said that, and admittedly coming from a radiation bias, here is the truth as I understand it from my non-medical years of study of our disease and observations from 11 years on Healing Well:

1. I think that radiation is an excellent choice for young men as well as older men. Think of it this way -- a young many probably has many more years to live with the potentially onerous side effects of incontinence and ED.
2. Radiation and surgery generally cure at the same rate in cases like yours. Radiation gives the patient a better chance of avoiding incontinence and ED both in the short and long run.
3. There are tertiary side effects that MAY occur with either choice but they only exist in a small percentage of cases. The chances of long term bowel incontinence with modern radiation for example are about the same as dying on the table during prostate surgery. My thinking on both of these was to be aware of the possibilities but focus on the main issues, e.g. cure, continence and potency...radiation wins hands down in my opinion.
4. There are other SE's of surgery that are fairly frequent that you should consider including shortening of the penis, bent penis and ejaculating urine.

Finally, and I know this comment will not be popular among my friends here who have chosen surgery, but I frankly wonder why almost anyone today would choose surgery instead of say...SBRT. I suppose there are reasons like the psychological need to "get it out" but I certainly would not recommend surgery to my brother and I would not recommend it to any man who comes to this site. Again, I am admittedly biased on this so please understand this as you read my comments but that's sincerely what I believe and can't let your journey continue without honestly stating what I think.

Good luck.

Jim

"4. There are other SE's of surgery that are fairly frequent that you should consider including shortening of the penis, bent penis and ejaculating urine."

I ended up with all of these conditions, as have other men on the forum. Certainly not all men. These are issues that matter to men, yet don't seem to be addressed by Uro/surgeons. When I mention the these possibilities someone usually comes in to say I'm being ridiculous. It doesn't happen to everyone, but it does happen. It certainly doesn't happen to anyone having RT.

Some radiation secondary cancer considerations below. The complications of hormone therapy that most RO's employ, but don't discuss, is not covered. There is NO silver bullet, and suggesting that any of us recommend one treatment over another simply because that's the one we choose is insulting, at best.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6074073/

Prostate
As already mentioned, prostate cancer is a good example of radiation-induced secondary cancers as surgery and RT both are equally efficacious for the treatment. Brenner et al. [42] have analyzed SEER database to compare second malignancy in prostate cancer patients who were treated with either surgery or RT. They inferred that RT for prostate cancer significantly increased the risk of second malignancies by approximately 6% (95% CI, 1%–11%) as compared to surgery (p = 0.02). Increased relative risk was 15% and 34% for those who survived ≥5 years and ≥10 years, respectively. Majority of the second cancers were bladder and rectal cancers. However, incidence of secondary lung cancer and sarcomas in radiation field also increased (lung received, 0.5 Gy). In a study to assess the impact of radiation among prostate cancer patients, overall rate of second solid cancer was similar in both 3D-CRT and conventional RT arm (RR = 1.00; 95% CI, 0.91-1.09) [43]. However, the risk of a second rectal cancer was significantly lower in the 3D-CRT arm as compared to conventional RT (RR = 0.59; 95% CI, 0.40–0.88). Rates of second cancer diagnosis (site specific solid cancer and leukemia) were equal for both higher and lower-energy RT (RR = 0.97; 95% CI, 0.89–1.06). When brachytherapy was compared to external beam RT (EBRT) patients, there were lower rates of second solid cancers overall (RR = 0.92; 95% CI, 0.83–1.02), significantly lower rates of second colon cancer (RR = 0.52; 95% CI, 0.37–0.73), and leukemia (RR = 0.60; 95% CI, 0.40–0.89).



https://link.springer.com/article/10.1007%2Fs00268-015-3324-x

Abstract
Literature about the risk of secondary cancer after radiation therapy (RT) of prostate and rectal cancer reveals contradictory results. We conducted a meta-analysis to examine whether the RT induces secondary rectal or prostate cancer in patients, respectively, with prostate or rectal cancer. All studies published in Medline or Pubmed up to March 3, 2015, containing RT of primary rectal or prostate cancer, and providing risk estimates of secondary prostate or rectal cancer were considered as eligible. Relative risk (RR) and standardized incidence ratios (SIR) were calculated using the random-effects model. Twenty studies met the inclusion criteria. 12 of them were from the Surveillance, Epidemiology, and End Results (SEER) database. For prostate cancer patients, pooled adjusted RRs or SIRs did not show an effect on the risk of secondary rectal cancer. However, notwithstanding the limitations of SEER-based studies, the subgroup of prostate cancer patients receiving external beam radiation therapy (EBRT) showed an increased risk of rectal cancer. For rectal cancer patients, pooled adjusted RR of prostate cancer was 1.12 (95 % CI, 0.44–2.8) and SIR was 0.40 (95 % CI, 0.29–0.55). All studies included in the SIR analysis of rectal cancer were derived from the SEER data source. Based on current evidence, RT for prostate cancer patients had no effect on rectal cancer incidence, except for patients who received EBRT therapy. However, compared with the general population, RT for rectal cancer is associated with a decreased prostate cancer risk as found in SEER-based studies.

https://link.springer.com/article/10.1007%2Fs00268-015-3324-x

Abstract
Objectives
As the number of prostate cancer survivors is increasing, the long-term health of prostate cancer patients has become a significant health issue. Radiation is known to induce malignant transformation, and prostate cancer radiotherapy is suggested to induce secondary malignancies. This report reviews the available data regarding the risk of secondary cancer after radiation for prostate cancer.

Methods
Epidemiological studies of the secondary cancer risk in patients with a history of prostate cancer radiation and the literature regarding radiation-induced carcinogenesis were reviewed.

Results
Prostate cancer is not associated with an increased number of additional malignancies. The data suggests a modest increase in secondary cancers associated with radiation for prostate cancer, as approximately one in 70 patients undergoing radiation and surviving more than 10 yr will develop secondary cancer. The most common sites for secondary cancers are bladder and rectum. In addition to the cancers adjacent to the radiation field, there is also an increase of cancers in distant sites, such as lung. The increased risk for secondary cancers is reported after external radiation, not after brachytherapy. The available data originated from studies of patients undergoing conventional radiotherapy. New treatment methods, such as intensity-modulated radiotherapy, may be associated with a higher risk of secondary cancers.

Conclusion
Although the incidence of secondary cancers after prostate cancer radiotherapy is not dramatically different from the overall population, patients should be informed about this risk. Other treatment modalities should be considered for patients with long life expectancy and for patients with additional risk factors.

https://www.renalandurologynews.com/home/news/urology/prostate-cancer/bladder-cancer-risk-higher-with-radiation-therapy-for-prostate-cancer/

In multivariable competing-risk analyses, EBRT was associated with a significant 35% increased risk of bladder cancer compared with RP, a team led by Marco Moschini, MD, PhD, of Luzerner Kantonsspital, Lucerne, Switzerland, reported in European Urology.

“This information should be discussed during the counseling of clinically localized PCa patients during the decision making regarding RP versus EBRT,” Dr Moschini and his colleagues concluded.

The study found no significant difference in the risk of rectal cancer between the treatment modalities.

The investigators identified their study population using the Surveillance, Epidemiology and End Results (SEER)-Medicare database. Of the 84,397 patients, 51,145 and 33,252 underwent EBRT and RP, respectively. The EBRT group was older than the RP group (median 74 vs 69 years). The median follow-up was 69 months, during which 1236 primary bladder cancers and 432 primary rectal cancers were diagnosed.

Reference

Moschini M, Zaffuto E, Karakiewicz PI, et al. External beam radiotherapy increases the risk of bladder cancer when compared with radical prostatectomy in patients affected by prostate cancer: a population-based analysis. Eur Urol. 2018; published online ahead of print.

https://www.bmj.com/content/352/bmj.i851

In conclusion, we identified a possible association between radiotherapy and an increased odds of secondary cancers compared with no radiotherapy or with surgery. We identified consistent evidence of an increased risk of bladder, colorectal, and rectal cancers in men treated with radiotherapy. We did not find consistent evidence for an association between radiotherapy and secondary lung and hematologic cancers. Although there was an increase in risk, the absolute rates of these secondary cancers remain low, particularly compared with other rates of complications associated with treatment for prostate cancer. This information could be helpful in the decision making process regarding such treatment.

https://ascopubs.org/doi/abs/10.1200/JCO.2019.37.7_suppl.16

Conclusions: EBRT-patients had a slightly higher SC-incidence than the general population. The rectal and urinary bladder cancer risk should be taken into account in follow-up after EBRT.

Adjusted risk analysis of second cancer (all and selected types) in 24155 radically treated prostate cancer patients.

ALL SECOND CANCER Multivariate analysis*
SHR (95 % CI) p-value
RP 1 .
EBRT 1.38(1.24-1.54) <0.001
RT after RP 1.21(0.98-1.50) 0.076
HDR-BT 1.18 (0.87-1.60) 0.297
COLON CANCER
RP 1 .
EBRT 1.06(0.80-1.41) 0.67
RT after RP 0.98(0.55-1.72) 0.94
HDR-BT 0.65(0.24-1.77) 0.40
RECTAL CANCER
RP 1 .
EBRT 1.72(1.15-2.57) 0.008
RT after RP 0.93(0.40-2.21) 0.881
HDR-BT 0.77(0.18-3.21) 0.719
BLADDER CANCER
RP 1 .
EBRT 1.38(1.24-1.54) <0.001
RT after RP 1.21(0.98-1.50) 0.076
HDR-BT 1.18(0.87-1.60) 0.297
LUNG CANCER
RP 1 .
EBRT 2.13(1.54-2.94) <0.01
RT after RP 1.32(0.68-2.54) 0.41
HDR-BT 2.81(1.44-5.49) 0.003
SARCOMA
RP 1 .
EBRT 3.25(0.63-16.8) 0.160
RT after RP NA** .
HDR-BT NA** .


https://www.cancernetwork.com/radiation-oncology/rt-prostate-cancer-linked-low-risk-secondary-cancers

For an individual prostate cancer patient, the results reported in this analysis warrant a discussion with his clinician, wrote the editorial authors, noting that secondary malignancies can be added to the list of avoidable adverse effects associated with the treatment of men with low-risk disease who likely need no treatment. But, they emphasized, these results do not impede the use of radiotherapy for men with high-grade, lethal disease who would benefit from such anticancer treatment

Good luck going forward....all is not as it would seem.

Post Edited (garyi) : 7/31/2019 5:08:40 PM (GMT-6)