PCa update

Swingshiftworker

leamon said:

Added info

Thanks Hopeful and VG for the replies and best wishes. The 'radiator' (a country boy expression) is the bladder . I had to go to the Emergency room late night after the 2nd treatment. A lot of pain for a few hours and finally decided I had to go. For anyone that has that almost constant pain and can't urinate, you might as well go to the ER. It won't go away.

My cardioligist, the oncoligist I chose and myself all agreed to take HT only if it became necessary. The HT would increase the cure rate by abount 15% but with only a 6% chance of dieing from Pca, is it worth all the problems that are a part of HT especially at this age?  VG, the total radiation was 39 sessions for a total of 78 or 79 Gy. VG “I wonder what has been decided in regards to the above comment/occurrence.” If I understand you correctly, they thought the early occurance of this might have been because of a large prostate. They left the cath in until Monday and didn't do the Friday session. Monday they removed the cath and resumed. For the treatment we have to drink 24 oz. of water 30 minutes before. I had trouble holding that Monday but not today. I had to get up several times last night. Probably because of the cath and FloMax. I seem about normal today. The last PSA I had was in May. It was, I think 14.8.

Thanks again for the wealth of info.

 

leamon

Best wishes . . .

Sounds like  you've made a well reasoned decision for your treatment.  Best of luck and keep us posted regarding your progress!!

leamon

Thanks Swing, I'll try to

Thanks Swing, I'll try to keep significient issues posted.

leamon

VascodaGama

Country boy expression

Leamon,

I am a city boy but live in the country now and frequently have to "watering the flowers". This is an issue since RT. Some nights I need to "empty my tank" three or four times, in particular when I drunk too much water at dinner time. I have no prostate (RP in 2000) so that the issue is thought to be due to scar tissue in the bladder.

Your emergency case most probably is a cause of RT inflammation which together with existing BPH caused constriction of the urethra and that to dangerous retention. In your post of 2012 we have discussed about the hyperplasia issue. It has increased the prostate size and lead to higher PSA levels meaning that the 14.8 ng/ml was not all due to cancer. Larger prostates are difficult to radiate in particular if the hyperplasia is located closer to the bladder neck (base of prostate).

Your radiologist knows about these details from the CT/MRI images. They plan the RT field of attack based on these pictures and avoid radiating trouble areas. Retention may occur again so that you need to be cautious. Drinking loads of water one hour before each RT session is good and helps in securing the local organs in place (they move frequently) assuring better delivery of the rays to intended spots.

IMRT in 39 sessions for a total of 78 or 79 Gy is typical; some delicate areas with get 1.8 Gy per session and others 2.0 or 2.5. Usually it includes localized lymph nodes. I recall feeling burning sensations when peeing at the three week period. Colities started much later at the 6th week. It all clears within two/three months post RT. I was careful with my diet at the time, avoiding some foods. You can inquire about this matter and change to something practical for you.

Best wishes for a successful RT.

 VG

leamon

Thanks VG.  Re the 39

Thanks VG.  Re the 39 sessions, the other place uses 45 sessions, probably a lower dose per.  I have noticed little if any change but only the 5th treatment  A bit of 'burning' after the cath but minor.  I wish you and all others well.

leamon

leamon

RT update

I commited to post updates so here is one.  I have completed 20 of 39 sessions.  With the exception of the cath episode after the 2nd treatment, I've had nothing that I could blame on RT.  I've been taking Flomax since the cath.  I only get up once or twice per night now as oposed to 2 to 4 before.  So far, it's almost a none event but doubt it will continue. I should be so lucky!  

Thanks and best to all,

leamon

VascodaGama

Update

Glad for the news. Let's celebrate the Radiator's improvement.

A bottle of red is already reserved aside to celebrate the final RT outcome.

Best,

VG

 

leamon

Thsnks VG.  That final RT

Thsnks VG.  That final RT will almost coincide with my b'day (5 days late).

Merry Christmas and a Happy, Healthy, Prosporous New Year to you and your's and all others on this board.

leamon

 

 

leamon

Latest follow up report

Hello All,

It's 6 months since I posted so, as promised I'm posting my latest info.  I finished treatment at the end of 2016 and just had my 1st follow up June 7.  The oncologist was thrilled with my 2.6 PSA and scheduled me to return in April of '18.  He says the rediation will continue to work for 2 years.  I have had very few problems except for the emergency room visit after 2 treatment.  I have had a bit of loose bowles (diahrria 1 time).  Probiotics was suggested and seems to have helped.  But it is not a big problem.  I also don't have a lot of stamina and can't do a lot of real work.  How much of that is because I am approaching the 85 mile marker on this road of life?  The Lord has taken care of me and I Pray all of you as well. 

leamon

PS  I had catarack surgery on 1 eye this year.  What a difference!

hopeful and optimistic

Great news

Let's celebrate.

The PSA should continue to decline, with prehaps a bump in about 18 to 24 months.

After cataract surgery, you should have no problems finding a bottle of wine. The  'radiator' should work fine.

Best

 

VascodaGama

Unmasked PSA

Yes, these are good news. I enjoy reading it allover again. The lower PSA is consistent with a successful RT outcome. One must recall that HT is not part of your protocol so that the PSA of 2.6 ng/ml is unmasked. The lowering from 14.8 (+α) to 2.6 in 6 months in a Gleason grade of 4 signifies that the RT gave a big blow to the bandit. You will need more time to confirm cure.

Congratulations.

VG

Miao

MRI shows 1.5cm and 0.7cm 2 tumors in my prostate

Hello ,

Does aggressive prostate cancer always have hight PSA?

Thank you

Lucky64

Do it

Miao,

 

Get the biopsy, it' doesn't hurt that much. They gave me a Xanax which really helped.

 

Then when you get your results, have the slides sent for a 2nd opinion to the famous Dr. Epstein at John Hopkins. My understanding is that if you have a Gleason Score of 7, and it is made up of 4+3, that puts you in Group 3, called  Intermediate, also known as agressive. That is what I am so I am now looking at surgery or radiation. If you get a lower score you can do Active Surveillance, basically waiting, it depends on your age and longevity plans. But do the biopsy.

 

Nick

Old Salt

Aggressive cancer

Does not have high PSA. In fact, the opposite may be true. In other words, high Gleason score cancers appear to be generating less PSA. But these thoughts are all highly premature. Just relax for the time being and get the biopsy over with. Choose someone who has done many. 

And PLEASE start your own thread. so that we can focus on YOUR situation. Look for the tag Add new Forum topic

Miao

Old Salt said:

Aggressive cancer

Does not have high PSA. In fact, the opposite may be true. In other words, high Gleason score cancers appear to be generating less PSA. But these thoughts are all highly premature. Just relax for the time being and get the biopsy over with. Choose someone who has done many. 

And PLEASE start your own thread. so that we can focus on YOUR situation. Look for the tag Add new Forum topic

Old Salt, thank you. i am

Old Salt, thank you. i am 68yrs old. psa was 4.3 on  nov, 2016, 4.08 on 3/31/17. no any symptom. it really scared me. i will have my biopsy next week

Miao

Lucky64 said:

Do it

Miao,

 

Get the biopsy, it' doesn't hurt that much. They gave me a Xanax which really helped.

 

Then when you get your results, have the slides sent for a 2nd opinion to the famous Dr. Epstein at John Hopkins. My understanding is that if you have a Gleason Score of 7, and it is made up of 4+3, that puts you in Group 3, called  Intermediate, also known as agressive. That is what I am so I am now looking at surgery or radiation. If you get a lower score you can do Active Surveillance, basically waiting, it depends on your age and longevity plans. But do the biopsy.

 

Nick

Nick,

Nick,

thank you, i never think i will have prostate cancer, i will have my biopsy next week.

leamon

VascodaGama said:

Unmasked PSA

Yes, these are good news. I enjoy reading it allover again. The lower PSA is consistent with a successful RT outcome. One must recall that HT is not part of your protocol so that the PSA of 2.6 ng/ml is unmasked. The lowering from 14.8 (+α) to 2.6 in 6 months in a Gleason grade of 4 signifies that the RT gave a big blow to the bandit. You will need more time to confirm cure.

Congratulations.

VG

No HT

Thanks VascodaG for reminding me that I made what I think was a good move by going with a different oncologist.  As I said earlier, I was about to start HT when the heart issue came up.  As you pointed out, we would be in the dark if HT were masking the results.

thanks again,

leamon

leamon

HT

 

Hello, I'm back.

 

After a 2.4 psa in June 2017, it jumped to 107+ in Jan. 2018. Did a bone scan last week-not good. Looks like I'm facing HT. Had I known how little side effects I would have from radiation, maybe I would have got treatment early but maybe 5 years changed the quality of the machines and techs. Part of the decision for delay was the Urologist estimated I would have 7 to 10 years without treatment which was about my life expectancy at 78. What ever, it is what it is. I am very reluctant to say 'I wish I had done this not that'. The road I took was pretty good. The other road might have turned out very bad. (Sorry if a little too philosophical).

 

Have an appointment Tues. with the radiation oncologist where I had radiation at the end of 2016 and also a medical oncologist at the same place. Have an appointment with the urologist that diagnosed my cancer in 2011 and I saw until I started the radiation. The lady at the urologist office said they would probably prescribe Firmagon and Xgeva and probably switch to Eligard because of the less frequent shots altho the Ageva would be monthly. I am now 85 and seem to have no heart problems but did have by-pass in 2011. The cardiologist was not is favor in HT in 2016 unless it was necessary so he may not be in favor of the Eligard. I would appreciate any thought on these and also any thoughts on choosing a Urologist vs a medical Oncologist. The Urologist and the group he is with deal only with urinary problems and Prostate cancer and he is about a mile away. The other about 15 miles.

 

 

 

Vgama, in an earlier post, you mention one shot of Firmagon as a trial. Do you know if it is an 80 shot or the full 240 1^st round? In re-reading I see that the radiation oncologist mentioned a one month shot as a trial at the time we were talking radiation in 2016.

 

Thanks and the best to all,

 

leamon

 

 

 

VascodaGama

The road I took was pretty good ........

Leamon,

This last increase is not good news. Could there be a lab error? You can always repeat the blood test before advancing with any decision. But you inform here for the first time since 2012 the result of an image study (without details) on which makes me difficult to opinion.

I understand that the rise and high number in PSA is worrying you and probably affecting your reasoning. After rereading your story (since your initial thread) I think that you did very well and even got the guts to use a radical at your age, to eliminate the unwanted guest. Your choice was the best. For me, there was a missing truthful image exam in the planning (field of attack) of the radiation that most probably did not cover the affected bone areas.

I wonder what have you discussed with your present oncologist/urologist, but it makes sense the comment from the urologist’s office in starting ADT (Firmagon and Xgeva) if apparent metastases have been detected in bone. Firmagon is an LHRH antagonist that will drive you to chemical castration providing control on cancer advancement, and Xgeva/Prolia will try preventing the breakdown of bone that is infested with cancer (it is used in osteopenia/osteoporosis situations or to prevent it). When guys got extensive metastases in bone, joints may be affected so that Eligard (another LHRH agonist) should only be administered after two weeks of antiandrogens like Casodex. LHRH antagonists (Firmagon) do not cause flare so that it is the best choice for starting the hormonal therapy.

Firmagon is also friendlier to heart issues and some guys continue this med all along their ADT. The protocol requires two initial injections of 120mg (2x120=240) that will accumulate in the body, which dose is then maintained with monthly shots of 80 mg. Please read my comments on Firmagon to another poster in here;

https://csn.cancer.org/node/314251

Eligard/Lupron (leuprolide) is typically injected every three months (lesser times at the doctor and lesser injection pain). I was on Eligard 6-month shots three times (covering 18 months) back in 2011. I did not have bone metastases but slight osteopenia. In your shoes I would do two important tests (urologists never request) before starting ADT that will help you in continuous control. Firstly the Testosterone (can be requested with the same blood sample for the PSA) and secondly, a DEXA scan (densitometry) to verify present bone health. If osteoporosis is already evident, then you should do any needed dental repair before starting Xgeva. Osteonecrosis of the jaw may occur.

At your age, I would try keeping a medical oncologist to follow your situation (every six months), in particular regarding drugs use and interactions with other illnesses. Urologists typically only follow the cancer issue and the treatment. Heart health is not their specialty and would not provide you with counseling on matters away from their urinary/prostate field.

Please post here any image study report you may have since 2012.

Best wishes and luck in your continuing journey.

 

VGama

 

leamon

 

 

Thanks Vgama, you are a vast store house of knowledge, more than I can absorb. I'll try to answer some of what you asked. Lab error; I wondered the same thing and got another report from a different lab about 1 week later. It was 130. Scans; I don't remember any scan except an MRI prior to the 2^nd biopsy. However, the report on last week's bone scan refers to one 9/28/2016 which would be about a month before I started radiation. The best I can do on the image study report is to copy it. Here goes;

 

“NM Bone Imaging Whole Body (Nuclear)

 

“Received technetium-99m MDP 3432.5 intravenously.

 

“There is very intense uptake mainly of the axial skeleton and proximal appendicular skeleton. Heterogeneous uptake is seen in the humerus and femur shaft bilaterally. There is relative lack of soft tissue activity and kidney activity. Findings are consistent with a superscan with diffuse skeletal metastasis. IMPRESSION: Diffuse skeletal metastasis.” Hope this helps.

 

I have added an appointment, Thur., with an oncologist that treated my wife about a year ago. As an aside, she had a scan in Dec., no sign of cancer. I'll probably know my options after that appointment and will post again. I'm thinking that I have little or no choice but to proceed.

 

Thanks,

 

leamon

 

VascodaGama

I am astonished with the contents of the bone scan report

Leamon,

I do not want to lower your esteem and positiveness you done in confronting your case. However, I am astonished with the contents of the bone scan report; in particular I am astonished for the fact that doctors had access to the scan findings before starting the radiation therapy and advanced in doing it. The report comments on vast spread of metastases which surely could not have been covered in the radiation planning. Patients on such a status are never moved into radiation therapies of the prostate for the risks it entails and the problem in future possibilities of controlling pain due to bone metastases.

The decision of the doctor(s) assisting you in 9/28/2016 was solo to diminish the burden of the cancer not to aim at cure. The progression of your illness was expected and that reflects in the last PSA increase. I am not a doctor but in view of your later information I think now that RT was not the best choice. You should have been moved into a protocol of chemotherapy with hormonal manipulations, reserving spot radiation to future needs as pain becomes unbearable. Surely your age and other health issues were taken into consideration and probably lead to avoid chemo and ADT, but RT for palliative administration purposes would not incur such vast field to administer 78 Gy, unless the planning included radiation in the whole skeleton.

Please let me know what has been discussed in your next consultation. Do not forget to request the above tests before starting ADT.

Best wishes,

VGama