Hello all. My 68 year old husband had a routine physical about six months ago that showed a PSA of 77. His PSA had not been tested for seven years prior (which infuriates me). He then had a biopsy that showed Gleason 9 (4+5) prostate cancer. Twelve samples were taken; only one sample was benign. Two samples showed Gleason grade group 4 (4+4) and the remainder grade group 5 (all of which are 4+5, however 9 samples show 5-10% ‘pattern 5’). Two samples stated that ‘Perineural invasion is present’. Two samples showed ‘Intraductal carcinoma with tumor necrosis’. A subsequent CT scan showed four enlarged lymph nodes in the vicinity of the prostate. His bone scan showed three areas of bone metastasis (“Findings suspicious for osseous metastatic disease involving the medial aspect the left iliac bone adjacent to the SI joint, posterior lateral aspect of the right fourth rib and T7 vertebral body.”) He has had genetic testing; nothing found, despite a long family history of cancer.
My husband was put on Casodex immediately and then on Eligard. He has been fortunate to have no side effects. His current PSA is .19 and his testosterone is ‘< 10’, so the ADT has been effective. We have been advised by the medical oncologist that the next step is either Docetaxel chemotherapy or Zytiga.
Meanwhile, my husband went to a PC conference out of town recently. One session was given by a well-known radiation oncologist at Medstar Georgetown University Hospital on the use of radiation in oligometastatic PC. I gather this is somewhat controversial. My husband then met with the radiologist in his office, and he felt confident that either Cyberknife (probably not covered by insurance) or IMRT radiation to the prostate and the mets is an appropriate next step.
Does anyone have any thoughts/insight on this?
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Based on the info provided by you...it is safe to conclude that he has metastatic prostate cancer. And the standard treatment for metastatic prostate cancer is Androgen Deprivation Therapy (Lupron) and added Abiraterone OR Docetaxyl chemo for full benefit.
Fortunately, he is responding very well to ADT as evidenced by PSA 0.19
What is the rationale for IMRT or cyberknife ? IMO..its unnecessary and still experimental .
Don't think any more benefit will be there than what he will be is having with ADT plus Zytiga or Docetaxyl. That's just my opinion. Congratulations for 0.19 PSA ,its excellent. I would go by your MOs plan.
Thanks for your input. My crude understanding is that the rationale for radiation is to minimize as much as possible the cancer in and around the prostate in an attempt to prevent further spread. The radiation oncologist said that this kind of treatment for oligometastatic cancer is much more prevalent overseas; US doctors adopt a more conservative approach.
I agree. Stampede trail showed that RT to prostate has significant benefit to overall survival in oligometastatic patients. I am oligometastatic, thankfully, had IMRT
I was on adt (Lupron/abiraterone) before and after. For me IMRT had zero significant side effects and ever since nighttime urination has gone down to one or two times/night.
This varies a lot from patient to patient and condition of prostate. Probably also varies from RO to RO. I had some seminal vesicle all involvement as well.
Some of the men I went thru this with had 40 sessions
Your husband may benefit from that. Researchers found that men with 4 or more bone mets, debulking the prostate did not extend survival. So with 3, there may be some oncological benefit, especially with whole pelvic radiation, and targeting the known bone mets.
There are other reasons to treat the prostate- the cancerous prostate may eventually cause urinary problems that may be circumvented by early treatment.
But there is no reason to wait for treatment with docetaxel or abiraterone. That kind of systemic treatment has a known benefit and should not be delayed. I have a logistical preference for docetaxel before abiraterone, just because you can get both done after 15 weeks, whereas if you start with abiraterone, it may be 3 years before he gets to try docetaxel. Therapies work better and side effects are less when used earlier. Here are the therapy options:
Thanks for your informative response. It’s so hard to choose the best course of action when there a number of options and conflicting study results. Radiation seems to fall into the ‘won’t hurt, may help’ category. We have no problem pursuing concurrent treatments, however I’m quite sure that the medical oncologist was emphatic that radiation and chemo should not be administered at the same time.
I’m more inclined to Zytiga since my husband has had virtually no side effects on hormone treatment. I’m also reluctant to do chemo since the side effects would probably be debilitating and clearly visible (e.g., hair loss) at home and at work. Our son has no idea that my husband is ill and we’d like to put off telling him as long as possible since he’s quite emotionally fragile. My husband’s employer doesn’t know that anything is wrong, and we don’t want to jeapordize his employment.
If you have any feedback on this line of thinking, I’d appreciate your input.
I was in similar situation like your husband. I did not want people at work to know and scare them . They depend on me and want to see me healthy.
Same debate happened on this forum about zytiga vs docetaxyl chemo 7 months ago.
I decided to go with zytiga. I am glad I chose zytiga. In 7 months, after being on Lupron and zytiga, PSA dropped from 830 to 0.7 . I Feel great and no body at work have a clue that I have something like cancer.
Wow! That’s a great response to Zytiga. I have no particular reason to think that my husband’s job would be in jeopardy if he revealed his situation, but at 68 you can’t take any chances. I started encountering age discrimination in my forties (in the IT field). My husband wants to make it to at least 70 before he retires.
Zytiga is the only medicine in the world which works at all THREE sites of testosterone production, namely testicles, adrenal glands and cancer cells .
Zytiga works by blocking an enzyme called Cytochrome p 17 . Once this enzyme is blocked ,no cell in the body can make testosterone depriving cancer cells of their food causing cancer cell death.
Everyone has their own preference about revealing the illness to employer or coworker. My preference is not to reveal as long as possible ...to avoid too much emotion and speculation in workplace plus constant all day every day query "how are you doing?' About telling son..I would prefer to wait and slowly and gently tell him later and explain that it was an evolving situation so we waited to tell you.
Children get very anxious and start imagining worst scenarios due to sudden impact of news of parents serious illness. Have to use caution as to when and how to tell son
Thanks for the information and the advice. My husband may have to say something to his employer if he does the recommended 40+ radiation treatments, especially since he would have to commute from Northern Virginia to DC (traffic is hideous around here). I know that he’d prefer not to bring attention to his illness, but we’ll see.
Everybody at work knows about my cancer, and they've been very supportive. I took 9 months off while having radiation to the spine, bladder surgery (bonus cancer!), and chemotherapy. Now on lupron, abiraterone, and xgeva. PSA <0.01 (was 216) and ALP normal. More details in my profile.
Chemo is a bit rough, but well worth it if it works, and it's something that can be done again in the future.
I'm not sure that radiation is completely in the "won't hurt" category. There are side effects. My acute side effects of SBRT (urinary, rectal irritation) lasted for a couple of weeks. If he has SBRT, it takes 11 days, after which he can pursue one of the others.
The degree of side effects is exactly the same for early docetaxel and early Zytiga, but different in kind. My friend has been able to keep a full head of hair with a cold cap. I've talked to several patients who got enormous support from their jobs, but I've also talked to a couple of patients who've been fired.
With your son, I think that whatever his reaction will be, it will be similar now vs later. Only if you wait, there may be added resentment that he wasn't included in a family problem from the start (I'm projecting from my own experience with my parent's cancers). I know parents want to shield their kids from all pain, physical or psychic, but that also shields them from fully experiencing life. I don't know what your relationship is like, or how he may act out. But consider sharing your tears and fears with him, and hold him as he experiences those things too. He might feel better if he feels included than if he feels he was excluded.
Thanks for the advice. In terms of radiation, the radiation oncologist would prefer to use cyberknife, but he cautioned that insurance generally won’t pay for it and patients don’t like being presented with an $80,000 bill. We would greatly prefer cyberknife since the number of treatments would be drastically reduced, but that cost is hard to swallow. We are working with an estate planning lawyer and a financial adviser to get things in order, with the intent of maximizing the inheritance that we leave for our son.
Hello. My husband Is currently using docetaxel since Xtandi failed. He has done three treatment to date and his side effects are minimal. He is not experiencing hair loss because we are ‘cool capping.’This is been an awesome addition regarding his treatments because we have grandchildren and really do not want to include them in this process that creates so much worry. So not losing his hair is instrumental. My husband started with a PSA of 18.2 and after two treatments his PSA is down to 8.2. He seems to be having a real response to docetaxil. Hope this helps. Best of luck. Many prayers
I live in New Jersey. My husbands treatment is in New York. Mount Sinai. There is a company called Penguin Cold Caps. The idea is to freeze the hair follicles during treatment. They come to our infusion room while my husband is being administered the Benadryl and prednisone. The cold cap (-37 degrees) is placed on his head for 20 minutes and done twice 2 prior to chemo. (40 minutes total) Then throughout the chemo treatment the cold cap is changed every 25 minutes to secure the correct temperature. Once the chemo bag is empty the cold capping continues for 4 more hours and is being changed every 25 minutes. We chose this bc we have grandchildren 10, 6 and 4 years old. Thought we would give this a try and perhaps avoid having the cancer conversation just yet. Hope this helps. The treatment costs about 600 dollars. You can change the gold caps yourself but there is quite a bit to it. We chose to have a person come and do it for us.
Your husband had a good response to ADT, so IMO, I would stick with that, possibly adding Zytiga then treat the prostate and LN’s with a one-two punch of HDR-Brachy + IMRT, followed by SBRT to the mets. Oligometastatic PCa is curable.
If you decide on radiating the prostate I would recommend you check with your RO to see if they use fiducials. These are three small gold markers placed in your prostate prior to radiation to help keep the prostate targeted during the radiation treatment. I received these when I had IMRT done at a major cancer center. A friend had radiation done locally and did not receive fiducials.
I have a very similar diagnosis. When told he could not remove prostate they put me on lupron. I went to MD Anderson for a second opinion. They recommended IMRT 45 day local control. Completed that 3 years ago. I've been on a vacation from ADT for two years. I am refraining from chemotherapy for fear it might affect my immunity system. PSA is 4 testosterone is 60. Think positive I wish you the best. Five years living with stage 4 cancer.
It's important to know what oligometastatic cancer is and what it is not. Oligometastases are a small number (3 or 4) of tumors identified by scans (PET or MRI). What it is not is all of the cancer. At the cellular level, cancer cells are not detectable by scans. In my case, I had two clearly defined tumors: one on the sacrum and one on L3. Both were treated with SBRT. On my next ADT holiday, L2, L4, L5 and T6 and the rest of the sacrum buddies showed up for the party. Any RO who had seen similar behavior would try to manage your expectations.
I didn't go into full detail in my initial post. After my initial dx, I had a DaVinci RP and 15 lymph nodes removed. 1 showed positive for PC. ADT followed by 39 fractions of EBRT. All was good until my first ADT holiday. As soon as my testosterone was up to normal, my PSA jumped and tumors showed up on the Sacrum and L2. Back on ADT, then SBRT to sacrum and L2. The sacrum had already been irradiated during EBRT of the pelvic floor, so it received a much lower dose than L3. Next ADT holiday, as soon as the testosterone came back up, PSA jumped to 6, then to 16 three weeks later. PET scan showed L3 black as coal. The sacrum lit up much greater than before and L1, L2, L4, L5 joined it. Back on ADT plus Apalutamide. Two weeks later, I had a pathological compression fracture of L2 followed by surgery a month after that. My testosterone dropped to <15 and my PSA was undetectable. The last PET scan showed the addition of T6. In a few weeks, I'll have another PET and we will have a discussion about additional radiation.
I appreciate you taking the time to provide further detail. It sounds like you’ve had a difficult journey, especially with the fracture and surgery. I’ve noticed that a lot of men seem to refer to an ADT ‘holiday’. Is that routinely recommended for therapeutic purposes, or is it a personal decision for men to restore libido and other functioning?
In my mind, the hormone "holiday" is a bit of an unwelcome joke, since every time I've gone off the Lupron, I've developed more metastases. But I believe there is some evidence that for men with less aggressive PC, intermittent hormone therapy extends the effectiveness of hormone therapy. (Tall Allen would be able to provide the exact references.) Since I haven't had any sexual function since surgery, and the side effects are tolerable, I expect I'll be on the Lupron until it stops working.
At 66 I was diagnosed with stage 4 and Mets. My medical oncologist went the other way. I did 6 rounds of taxotere ( Chemo ) then on to xtandi. I’ve talked to him about radiation treatments,he says that’s next when this fails. PSA at <0.05 for the last 40 months. Trust your doctors but ask why
Thanks for your rely. Actually, your post brings to mind another issue...I thought Zytiga was generally used before Xtandi. Can I ask why you received Xtandi first?
Doctor is affiliated with Mayo , they felt it was the way to go, he has since admitted that I have been on Xtandi longer ( successfully ) than any of his other patients. Small trial for him I guess. Working so far
I had my prostate radiated along with several nodes despite being widely metastatic. As mentioned above it may help prevent some nasty urinary issues down the line as well as eliminate that central mass of cancer cells. I’ve had some top MO’s tell me it was one of the best things I’ve done in the treatment of my PCa. I’ve also had chemo and been on ADT since day one.
My PSA has been undetectable for over 5 years now.
OligoMetastatic Prostate Cancer Disease with Dr. Eugene Kwon from the Mayo Clinic I would suggest you watch this video from Dr. Kwon of the Mayo Clinic, Rochester, Mn. It is a tyoutube.com
Actually, I’ve watched every Dr. Kwon video that I could get my hands on. Very interesting. I tried to make an appointment with Dr. Kwon, but he only accepts men who’ve had RP and (I believe) who’ve relapsed.
Hi. I am 52 years old. I explain my treatment so you can compare it.
In July 2018, the patient performed a general control analysis where a PSA of 65.68ng / ml was observed (ratio: 0.07)
On 07/18/2018, ultrasound prostate biopsies with AP result of Gleason 7 adenocarcinoma (3 + 4) are performed in 3/3 cylinders of the LPD (40% of the material), in 2/3 cylinders of the transitional zone (80% of the material) and in 2/3 cylinders of the LPI (40% of the material), all without signs of perineural invasion.
PET-TC COLINA (04/09/2018): Small adenopathy in the right external iliac chain (there is discrete hypermetabolism in several adenopathies at this level), as well as in the left ilio-femoral region. Prostate gland with heterogeneous uptake of the predominant contrast in LPD and post-RTU changes, with discrete hypermetabolism with a more active focus on LPD. Presence of some slightly osteoblastic areas in the left ischium, left iliac bone. It was evaluated as a prostate neoplasm with right and doubtful external iliac adenopathies, bone marrow, so MRI of the dorsal-lumbar spine and pelvis were requested to rule out bone MI, and in which a lesion in the left ischial bone compatible with probable metastatic involvement was visualized. . MRI of spine no other injuries.
The CT scan confirmed that the bone metastatic lesion was probably unique.
The Committee considered that it should start treatment of metastatic disease type CHAARTED and after completing the 6 cycles if there was a good metabolic response, treat it as oligometastatic disease on prostate adenopathies and single bone lesion
1er Eligard quarterly administered on 11/10/2018
Docetaxel at a dose of 75mg / m2 every 3 weeks concomitant with hormone therapy (which began on 03/12/2018). Between 03/12/2018 and 03/20/2019 the patient performed 6 0 cycles of treatment with docetaxel, with correct tolerance. As side effects he presented epigastric discomfort, which improved, taking Omeprazole correctly. It refers to joint pain and asthenia No neurotoxicity. He performed dexamethasone prophylaxis correctly.
23-4-2019 ANALYTICS; Normal blood count Normal coagulation Normal biochemistry PSA 0.03
It was assessed as a complete response by PSA to treatment with hormone therapy and chemotherapy and in the case of a debut oligometastatic patient with a complete response to hormone-chemotherapy treatment, radical treatment with radiation therapy on chains and on left ischial bone blast lesion was proposed to consolidate the answer that had demonstrated impact on survival.
After evaluation, the patient received RDT treatment of consolidation of response with curative intention on the prostate, the drainage ganglion areas and the bone MI to the left ischium. The treatment was performed with IMRT technique and dose of 50.4Gy in 28 fractions of l, 8Gy on ganglion areas, overdosing on the prostate with 24Gy in 6 fractions of 4Gy and on bone MI with 3 fractions of lOGy. The tolerance was correct.
15-10-2019 ANALYTICS: Normal blood count; Normal coagulation; Normal biochemistry: PSA 0.008 Testosterone 0.13
It is assessed as a complete biological remission of the disease.
Continue with Eligard Quarterly maximum 3 years in total.
This is my case. I am currently well. Tired at times and muscle and joint pain due to Eligard. But well.
Hopefully this situation lasts.
I hope my treatment helps you. This protocol seems to be successful in oligometastatic patients.
Thanks for your detailed reply, and congratulations on your remission! I noticed that you were advised to take Eligard for a maximum of three years. I wasn’t aware that there was a time constraint on the use of Eligard. Any idea why?
Does anyone have any thoughts/insight on this? <===<<< Your question, Got plenty of answers. So keep posting here for more updated information. How old is your son? Best way to discuss your husband's Pca with your son is for all of you go out to dinner and gently break the news.... (make sure your husband pays)....
Our son is not a kid - he’s 29 - but he’s really been through a lot health wise and otherwise. He’s been on a good path for the last couple of years. He and my husband are best friends and do a lot together. This is going to devastate him, and we’re agraid he’ll regress. Someone suggested a gradual release of information, with positive affirmation, and I think that’s probably the best way to go. Thanks for your concern.
Well, then my only suggestion would be that when you tell him, you emphasize that Pca is a slow growing disease and that most men die with it than from it..... Remember, God is on your side....
I was diagnosed with stage 4 PCa in 2015 at the age of 53. PSA 227, Gleason 4+4=8. 1 met to spine that was cracking a vertebra - very painful.
Immediately started ADT and early chemo. PSA dropped to 9 in first month and undetectable writhing 4 months. (Also used cool caps - no hair loss on my head.) was able to keep traveling and working. Just took a few days off after each chemo. And had radiation to T8 vertebra.
In 2016 I visited MD Anderson for a second opinion. (Friends on this forum helped me form my questions for the visit.) That’s when I was told I was oligometastatic. They continued ADT. But after about 18-months, PSA started creeping up to 2.0. Started Zytiga. PSA was back to undetectable in a month and has stayed there for 2 more years.
In 2017, my oncologist said she wanted to ‘try and cure me’. I had no sign of any mets outside the prostate anymore - the met in my spine that was radiated showed no activity. And nothing on PSMA scan or circulating tumor cell test.
Had a prostatectomy at MD Anderson in July 2018. Recovered well. To this day, still no PSA and scans remain clear.
I am going on an ADT and Zytiga ‘holiday’ starting in January. My hope is a durable remission (or maybe a cure). Certainly no guarantees ... but I’m very optimistic.
It’s been a tough 5 years, after ADT, radiation to met in spine, chemo, Zytiga, prostatectomy. And I had some heart issues caused by the radiation, so got a pacemaker a couple of months ago.
But I’m still here with my precious family! I workout every day - walked on the treadmill and used an elliptical for 1 1/2 hours yesterday ... burned 700 calories. And I’ve actually dropped 20 lbs while on ADT, so I feel great.
My point is that there is hope with oligometastatic PCa - and none of this was shared with me as recently as 2015. But they are trying new things and it’s been working for me thus far! I do hope you have similar favorable results!
As for telling your boss and the kids - I told them both as soon as I knew. They were all incredibly supportive- and it was one less thing to worry about. Pray about it and you will make the right decision.
Congrats on your continued remission/recovery! Have to admit I’m surprised that you had RP after chemo and radiation; hadn’t heard of that before. Also, I didn’t know that radiation can cause heart problems. I’ll have to look into that. My husband now works out 1-1/2 hours each day and he’s lost 30 pounds. Meanwhile, I make him a mostly vegetarian dinner each day (often with meat on the side for me and our son). Hopefully, it all helps. Best wishes to you and your family.
All the standard of care does is kick the can down the road and leave most men trashed in the process with a QOL that’s not great... maybe better than dead but there aren’t many who can do what a few here can...
I read your husband’s history and I’m so sorry that he’s going through such a hard time. Dr. Onik sounds a bit ‘out there’, but I’m certainly open to alternative or complementary therapies. Have you tried Dr. Onik’s protocol?
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PC has spread to liver!! NEED a HAIL MARY!!
Searching oligometastatic options
Radiation or Not?
Radiation or operation with mets and beginning ADT only once symptoms arise?
67 yo dad with stage 4 PC
