Radiotherapy - are there any disadvan... - Advanced Prostate...

Advanced Prostate Cancer

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Radiotherapy - are there any disadvantages?

londoncyclist48 profile image
43 Replies

So, 7 months on enzalutamide has passed quickly and I get a phone call out of the blue from the Royal Marsden. "We want you to start targeted radiotherapy on your prostate. Please come in for us to arrange this." My PSA currently hovers around 0.18. I begun at 10.8 ("but it should have been much higher looking at your scans" clinician). Doctor says the fall is very good. So, here's my question. I'm currently feeling well and few side effects. Doctor says he wants to do radiotherapy to eliminate the last stubborn active cancer cells in my prostate. But is this the best option? Will I suffer any problems after radiotherapy? Will it affect any future treatments?

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londoncyclist48
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Tall_Allen profile image
Tall_Allen

It is a very good option for men who have few metastases.

prostatecancer.news/2018/09...

It has the added benefit of preventing later urinary difficulties caused by cancer clogging your prostate. Unfortunately, you won't always feel as good as you feel now. Debulking the prostate will help you feel better longer.

There may be some side effects, but they are usually mild and transient:

prostatecancer.news/2018/10...

londoncyclist48 profile image
londoncyclist48 in reply toTall_Allen

Hypothetical question. If surgery was the only option, would it in the long term prove to be the better option? I am influenced by the article that says you should throw the kitchen sink at advanced prostate cancer.

Tall_Allen profile image
Tall_Allen in reply tolondoncyclist48

No. Surgery and radiation are equivalent at curing localized prostate cancer. Radiation has an advantage when the cancer is outside of the prostate. So far, the data show that radiation provides a benefit to prostate treatment when there are few metastases. There is a big clinical trial which will determine whether surgery is as good.

Tall_Allen profile image
Tall_Allen in reply toTall_Allen

I should have mentioned - do not do both! Radiation after surgery has much worse side effects than if you had done radiation in the first place. Salvage radiation is certainly possible if one has to, but it is a very bad idea to plan on it.

londoncyclist48 profile image
londoncyclist48 in reply toTall_Allen

My concern is this. That in 12 months time that I will wish I had had surgery rather than radiotherapy. And that after radiotherapy, surgery will be difficult.

in reply tolondoncyclist48

As someone who had IMRT 4 months after surgery, if there are worse side effects I cannot tell you what they are...I do have ED but I'm keeping my fingers crossed it resolved after I'm off ADT. Only time will tell

Good luck with your treatments.

Tall_Allen profile image
Tall_Allen in reply tolondoncyclist48

That is called "anticipated regret." You may want to learn more about it:

prostatecancer.news/2017/10...

These "head games" do not serve you well.

The only reason that debulking has an effect is that it eliminates the main source of where metastases come from - the prostate. There is also metastasis-to-metastasis spread that will occur even without a prostate in the picture. You only know about the metastases that are big enough to see (bigger than 5 mm) and that put out almost all of your PSA. Even if you get rid of your prostate and every met that's big enough to see, that leaves thousands of smaller metastases in there. They will eventually grow and spread. Debulking slows it down, but it does not stop it.

Radiation does a better job at eliminating cancer that has spread outside of the prostate, because it eliminates cancer outside of the capsule - surgery does not. If you were non-metastatic, I would tell you about salvage after radiation that doesn't involve surgery. But that is pointless in your case. No doctor will do any kind of prostate salvage for you whether you debulk first with surgery or radiation - that would put you through lots of extra side effects with no benefit.

in reply tolondoncyclist48

It is a none starter my friend. There isn’t surgery after Rt . I still have my prostate after Rt .No surgery for me either. Just pray this approach will help you as it has me . We all suffer .

JolleySprings profile image
JolleySprings in reply toTall_Allen

A Decipher test will help in deciding which might be best. My husband had a Tertiary Gleason Grade 5 and Gleason 4 + 4 and his DECIPHER test predicted the failure of radiation to be effective. It was Correct. Radiation failed.

Tall_Allen profile image
Tall_Allen in reply toJolleySprings

That was salvage radiation post-prostatectomy, right?

JolleySprings profile image
JolleySprings in reply toTall_Allen

Yes.

Tall_Allen profile image
Tall_Allen in reply toJolleySprings

The OP has not had a prostatectomy, so he can't have the Decipher test your husband had.

JolleySprings profile image
JolleySprings in reply toTall_Allen

Oh, I see!!! Thanks! I am sub-intelligent with all this knowledge given on this sight but super thankful for what I can glean! How much “stock” do you put into the Decipher? Are there other tests you know of that might be predictive in various treatments?

Thank you.... BTW ... are you a physician or medical researcher or self-learned? Just curious? You knowledge is impressive!

Tall_Allen profile image
Tall_Allen in reply toJolleySprings

I doubt you are sub-intelligent - it takes a while to catch onto the differences in patient's situations and how they affect therapies. I think Decipher is great for 2 situations: (1) for men on the fence about staying on active surveillance, and (2) for men on the fence about whether to have potentially curative salvage radiation after prostatectomy for localized PC. They have started doing what they call "PORTOS" in the latter group of men. It is interesting, but requires further validation:

prostatecancer.news/2016/11...

JolleySprings profile image
JolleySprings in reply toTall_Allen

I’m looking at my husband’s Decipher results right now. His predictive Post-op Radiation response is (3) on a scale from 1-100His ADT response predictive score is 56! Not very good odds on either one! His tumor cell proliferation score is 72!!!!!

Next step is the PSMA and after that going to try Degarelix.

What are your thoughts on these next steps?

Thanks so much!!!

luis85715 profile image
luis85715 in reply toTall_Allen

My prostate was removed by DaVinchi surgery in 2012 easy in and out same day from hospital, they said was encapsulated inside the prostate and they missed something around because two years later my PSA start going up. Now after differents medications, radeon 223 shot, lupron shop every 3-months, chemo, provenge, xofigo, ensalutamide, limparza my cancer methastases to a few spot on bone. Now going radiation on my left jaw. So far no other pain beside mouth. Make sure if they surgery your prostate they do radiation or surgery after to make sure no cancer cell are outside the prostate. It is more pain after surgery but no future chance cancer cells are present. My scan 3 or 4 year ago showed spot on my left bottom jaw but Doctor said it does not go to face and they blame dental problems, after visit dentist pulled my wisdom tooth they made a face scan and cancer show up there. Now they are going to do radiation. So far even bone scan show a fews spot on my skeleton no pain so far. 9 years so far and i wish to live life without pain.

tango65 profile image
tango65

If you have 3 or less bone metastases the treatment of the primary tumor is associated with a better overall survival

ncbi.nlm.nih.gov/pmc/articl...

noirhole profile image
noirhole

I would go for the double punch. Work towards a durable remission. Good luck!

londoncyclist48 profile image
londoncyclist48 in reply tonoirhole

Thanks. That's what I'm thinking also.

treedown profile image
treedown

I am not sure if I am.understanding this correctly but I am not quite sure what this statement means "but it should have been much higher looking at your scans". Is he saying he thinks your PSA should be higher based on scans?

londoncyclist48 profile image
londoncyclist48 in reply totreedown

Yes. For some reason, my PSA was relatively low but the disease had spread a lot. It's in my bones and my lymph nodes.

treedown profile image
treedown in reply tolondoncyclist48

The Drs are/were convinced I have more disease than my scans (bone/CT) showed based on my high PSA. Axumin scan was denied by insurance so the tried a biopsy and did an MRI but could not even find a LN in the area they were looking and the MRI showed reduction in the LNs that showed up on CT. So they treated me with curative intent. If they had found anything my RO said he would have just radiated the prostate.

treedown profile image
treedown

Sorry, I also meant to say I was treated with radiation and while we are all different I had very little side effects if any. I am sleeping through the night now and was getting up twice before radiation and 4 times a night during.

londoncyclist48 profile image
londoncyclist48

Chris Parker

cesces profile image
cesces

There are two major types of radiotherapy, imrt and sbrt.

You should investigate both, then probably choose sbrt.

You may want to ask tall Allen about this choice.

MateoBeach profile image
MateoBeach

Lovely garden patch , just beginning to emerge in Spring. I presume your PSA is low due to ADT regimen. Nevertheless, if there is a node or other lesion that would be accessible to biopsy to determine histology type and immune markers, that could be valuable information to guide therapy selection. The radiation to the prostate is a good idea for the long term vs the shorter term inconveniences and SEs. Kind Regards

londoncyclist48 profile image
londoncyclist48

Thanks. That's my mother's garden! Yes, I'm on Zoladex and enzalutamide currently. PSA came way down on this treatment but I understand that the hope is that radiotherapy will reduce it to zero.

in reply tolondoncyclist48

Rt can work well .

j-o-h-n profile image
j-o-h-n

From Memorial Sloan Kettering Cancer Center In New York City.

Treatment Options for Prostate Cancer

For men with slow-growing prostate cancer that may have been detected during screening but is not aggressive in behavior, we offer active surveillance. During active surveillance, your doctors regularly monitor your tumor’s characteristics for any signs that it is changing.

For patients who are interested in or who are advised to undergo surgery, our surgeons are among the world’s most experienced in performing prostate operations, and we’re continually working to improve the safety and effectiveness of radical prostatectomy. We offer robotic as well as laparoscopic and open surgery. Our surgeons are also highly experienced in performing a procedure called salvage radical prostatectomy, which is sometimes done for men who experience prostate cancer recurrence after radiation therapy.

Our radiation oncology team is one of the most experienced in the world and has an established track record of treating prostate cancer with various types of radiotherapy. Our physicians have broad experience using image-guided, intensity-modulated radiation therapy (IG-IMRT), stereotactic high-precision radiosurgery (similar to CyberKnife), stereotactic hypofractionated radiation therapy (MSK PreciseTM), and low-dose-rate permanent seed implants and high-dose-rate temporary seed implants (both forms of brachytherapy).

Our doctors not only pioneered these approaches but we continue to improve and enhance these therapies. Because of our expertise with a variety of radiation therapy techniques, we are able to personalize your treatment. Furthermore, we’ve developed and refined the use of sophisticated tools — including state-of-the-art linear accelerators, advanced imaging approaches, and high-speed computer-based systems — to deliver powerful doses of radiation directly to your tumor with incredible precision.

For men with small, localized prostate tumors, we offer a treatment approach called focal therapy, or partial gland ablation. Focal therapy is a general term for a variety of noninvasive techniques that use such techniques as freezing, heat, electricity, or highly targeted seed implants that destroy only the portion of the prostate where the cancer is located. This approach may be particularly beneficial for men with recurrent prostate cancer in the prostate itself who have already received radiation therapy. Our brachytherapy experts are among the most experienced in performing these complex implants.

For men with aggressive cancers that are at risk of spreading into tissues next to the prostate or to the lymph nodes, we use combined treatment approaches, including hormone therapy, brachytherapy, and external-beam radiation therapy, which can comprehensively treat at the risk areas while reducing the radiation exposure of normal healthy tissue.

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This approach allows us to give high radiation doses to the prostate and reduced doses to the surrounding tissue in order to give you the best chance of a cure and to reduce the long-term side effects of treatment. For men with very high risk prostate cancer, we have novel clinical trials that combine stereotactic radiosurgery with next generation antiandrogens in an attempt to improve cure rates.

For men with a rising prostate-specific antigen (PSA) level after a radical prostatectomy, external-beam radiation therapy with or without hormone therapy may be the only chance for a cure. Our radiation oncologists use highly targeted IG-IMRT to give patients the lowest risk of long-term side effects from radiation therapy.

For men with prostate cancer that has spread outside the prostate, we offer a number of systemic therapies, including hormonal therapy, chemotherapy, bone-targeted therapy, biologics, and clinical trials. Our medical oncologists are experts at determining which treatment or combination of treatments will be most effective for you, considering the specific features of your disease. For men with advanced prostate cancer, our team offers a number of clinical trials testing targeted therapies and new approaches to treatment.

Our doctors have led the field in the development and conduct of practice-changing studies targeting advanced prostate cancer with such drugs as abiraterone acetate and enzalutamide. We are also the coordinating center for the Prostate Cancer Clinical Trials Consortium, a collaboration between 13 leading centers focused on early drug development and clinical trial design.

In certain men with oligometastatic prostate cancer (prostate cancer that has spread to a limited number of locations in the bones), we offer stereotactic radiosurgery for both the prostate and the sites of metastatic disease and combine that with other treatments such as surgery or systemic therapy, in order to further improve outcomes.

Follow-Up Care

Many men treated for prostate cancer experience significant side effects. Our follow-up care experts can offer a number of programs to help you cope with or overcome those problems and maintain a good quality of life. For men who experience changes in sexual and reproductive health, our Male Sexual and Reproductive Medicine Program can help you adjust to life during and after cancer treatment.

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 05/09/2021 10:31 PM DST

So far so good. Now let the Rt knock out the tuffer bastards . I’ve been clear over five yrs from Rt and adt .. good luck .

londoncyclist48 profile image
londoncyclist48 in reply to

Did they take you off the hormone therapy after your PSA level fell?

in reply tolondoncyclist48

No Sir. I’m still on 4 little pink pills per day. My PSA fell within my first two shots of adt. Never to return again thus far.. no no PSA no signs of pc lucky to be slice . Good luck finding your fix! 🌵

lcfcpolo profile image
lcfcpolo

Hi londoncyclist. UK patient here, although a non cyclist. I have been really interested in having radiation but my Prostate Cancer has spread / metasised to 8 different areas, all around the pelvic, lower spine area. If possible, please can you ask Chris Parker if you have more than 4 spots for radiation, as if you have I may well ask for a referral to him. I wonder if you are part of a trial even. I was diagnosed last May, 2020 but had a much higher PSA. If you can feedback after your appointment it would be really appreciated. Thanks in advance. Graham

londoncyclist48 profile image
londoncyclist48 in reply tolcfcpolo

Like you, I rarely get to see any doctors. Whatever I tell them on the phone, they just reply "I'm not unduly concerned by your blood data at the moment" or similar. Impressed by your PSA scores on enzalutamide. Lower than mine!

londoncyclist48 profile image
londoncyclist48

I've been marked up for radiotherapy. Thought I'd post the picture here in case anyone else reading this is wondering what they look like. The tattoos are tiny.

Radiotherapy tattoo
in reply tolondoncyclist48

Pic didn’t come thru... no need , I had the tattoos too. They fade away in time. The gold markers are permanent .

londoncyclist48 profile image
londoncyclist48

Short update. I've had my first session of radiotherapy. Felt a very strange buzzy feeling in my prostate area that came on very soon after the treatment. Lots of feelings that I need to go to the toilet, mainly to pee. Felt very uncomfortable rather than painful. I was surprised because I thought the side effects would be much slower to emerge. Urination problems have gone through the roof. Lots of visits to the toilet during the night. Urine flow rate much reduced too. Things have slightly improved each day however. Happy to go through this for the survival benefits. But I'm annoyed that I had got bathroom visits during the night down to one or zero and now it's all come back. Sleep interruption is not fun especially when you have to work the next day. But the good news is, I've felt really good this week. Probably just the sunny weather in the UK. Had a blood test straight after the procedure and my PSA is down to 0.13. Really hoping it goes even lower in the coming weeks.

What happens with the metastases? Is it possible to treat them too?

londoncyclist48 profile image
londoncyclist48

Second update. Had second radiotherapy session. Immediately had similar side effects to last week just as I was getting over last week's session. Told the nurse specialist at my clinical session afterwards. To cut a long story short, she thinks I'm getting too dehydrated and it isn't caused by the radiotherapy. I'm now wondering if my brain is playing tricks on me. Lots of stinging sensation when I pee. Lots of urges to pee. I will try to drink more. Have bought lots of cranberry juice based drinks to drink. Not sure whether they work but it's better than drinking tea and coffee. Two sessions down. Four to go. What happens after this?

londoncyclist48 profile image
londoncyclist48

Six weeks since radiotherapy. Now only getting up once in the night, unless I drink lots of tea and coffee in the evening. So I don't now. Pretty obvious conclusion I guess but having given up beer, I love tea and coffee and biscuits these days. Nervous habit I guess. But I feel cheated if I can't have a drink while watching TV in the evenings.

Down in Salisbury for two weeks having escaped mad London.

Me
londoncyclist48 profile image
londoncyclist48

No stress here.....

Garden
londoncyclist48 profile image
londoncyclist48

It's now been 3 months since the end of my radiotherapy. I have recently had a blood test and my PSA is now 0.08 I would strongly recommend radiotherapy to anyone. I admit I was apprehensive about the whole treatment, mainly because the doctors start listing all of the rare side effects, but I have had a great result. It even seems a better option than surgery because you don't risk any of the complications from surgery. I don't know whether anyone is still following this thread but I feel compelled to share my good news here. I understand that 0.08 is regarded as remission and I welcome any expert comment on that assertion. This has truly been a journey and I have learnt so much about prostate cancer treatment in the past year. My love to you all!

treedown profile image
treedown in reply tolondoncyclist48

You were diagnosed exactly one year after me. .08 is indeed considered remission after RT. Mine was expressed as <.1 when I hit chemical remission. Most recently my test showed <.04. Congrats!

londoncyclist48 profile image
londoncyclist48 in reply totreedown

Thank you

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