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JJMWFF1955
Posts: 11
Joined: Apr 2017

My PCa was diagnosed in OCT 2016 and took the Radiation, HT route

Had 44 treatments ending Jan 16 of this year.  The had me do PSA on Feb 21  and when I made my visit to the Rad Dr on the 27th  he said it was 2

I have hot flashes a lot, frequent urnination which when i get up to go 4 or 5 times a night causes some insomnia.

Now I go to the Urologist tomorrow and don't know what questions to ask. 

Even though they did the imaging test i often wonder about the lymph nodes

My Gleason was 8

7 of 8 cores positive.

Anyone with any advice? 

VascodaGama's picture
VascodaGama
Posts: 3029
Joined: Nov 2010

Maybe by now you've gotten some answers from your urologist. In any case, I would say that you need to wait longer to verify if cancer still exists. The PSA is the marker to follow but you need its previous values to compare with the last one.
Guys that took the radiation route typically experience longer periods of elevated PSA before it real goes down. However, I wonder about the HT protocol (type of drugs and length of administration) that you had in combination with the radiation. HT would drive the PSA to low levels. What was your PSA before starting treatment?

Radiation scars affect urination, causing retention or frequency. The urologist can give you some meds to help in the issue.

Welcome to the board.

Best wishes for full recovery.

VGama

JJMWFF1955
Posts: 11
Joined: Apr 2017

Thanks for your information.  That was the same prognosis the Rad Dr. told me on my Feb visit. 

I'm on Elegard 6 months due against next month.  PSA was 9 but since I was on Finasteride then it is doubled so that would make it 18

I'm no longer on Finasteride but still take Flomax.  I have frequent urination but it has gotten somewhat better.

I had an appointment with the Urologist today but while I was there the med tech told me I was due for my Elegard shot so she went out for 5 min then came back and told me they were wrong it was due next month and since it was next month they canceled the appointment i had today and reset it for next month so I didnt get to see the Urologist and they didnt charge me for that appointment. Now they gave me the order for the blood test for PSA and told me to do it next week but there is no date on the order so I'll have to call back when I get a chance to check on that order.

Sometimes the frequent urination at night causes me to lose sleep and I cannot use my sleep apnea equipment because every time I go to bathroom i lay down and in a few minutes i have a hot flash.  It takes me a lot longer to get back to sleep so it takes me longer to get the amount of sleep i need.

I read in news about Jerry Brown Gov of Ca that 5 years after Rad treatment he now is going to do Radiotheraphy.  Do you suppose he had recurrance?  What exactly is radiotheraphy?

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3307
Joined: May 2012

JJ,

I responded to your question on the other thread you posted at, and recommended there that you "meet Vasco."

max

JJMWFF1955
Posts: 11
Joined: Apr 2017

My PSA that was done at time of biopsy back in OCT was about 10 but since I was on Finasteride the Urologist says that it is acctually doubled.  Then after treatmant which was in middle of January I had a PSA done on the 21st of Februrary which was 2.  My next PSA will be done on May 2nd., then i see Urologist on the 9th. My guess is I have to have office visit with Urologist to get result.

VascodaGama's picture
VascodaGama
Posts: 3029
Joined: Nov 2010

JJ,

I do not know what you have inquired in the thread pointed out by Max above, but the urination issue due to RT (radiation treatment=radiotherapy) typically improves in one/two months past administration . Radiation causes localized inflammation at bladder's muscle wall where the nerves do their contraction job. The feeling differs by position (standing or laying down). In any case, you should  call the office of the urologist or radiologist and explain on your impossibility in using the apnea equipment properly due to the lack of sleep. They will provide you a drug's precription for the frequency, sleeping and any other isue you need a relief.

I had radiation back in 2006 but never had urination issues till recently. My doctor says that RT caused some scar tissue which effects (late side effect) are now present. I am taking Betmiga 25mg (mirabegrom) intermittently (one month on/off) and sleeping much better.

Hormonal treatment (HT, ADT) also causes urination frequency and influences our sleeping patterns. The culprit is our hypogonadism status (sort of menopause). HT is linked to many side effects which get nasty in some guys. Hotflashes and fatigue are the most common effects. Mood change and impaired vision may occur occasionally. The best way to fight it is to change our life style. Earlier dinners with less liquids consumption at evening and afternoon naps helps a lot. Changing diet and fitness program (physical exercises) also help me to counter the effects. I still do daily walks (2x 2.5Km), work my veggie garden and play golf. Knowing in advance what to expect made me to mentally accept the situation and gave me peace of mind. Here is a list of Eligard's possible effects;

https://www.drugs.com/sfx/eligard-side-effects.html

Regarding the PSA periodical tests, I would suggest you to have the next done one week before meeting the doctor (May) and every three months thereafter. I also recommend you to get a testosterone test done together with the PSA. This will help in verifying Eligard's effectiveness.

What is your age? Can you share more details on your other health problems?

I am not a medical doctor. I have listed in a past thread (2016) a series of medications and actions to counter HT side effects that I collected from experienced patients. I have also explained before how does radiation affect/kill cancer. Sorry but the unfriendly search engine of this forum doesn't permit me to locate it. Please try yourself looking for dated 2016 in here;

https://csn.cancer.org/search/node/VGama?page=42

http://csn.cancer.org/comment/1471252#comment-1471252

Best wishes for quick improvements.

VGama

JJMWFF1955
Posts: 11
Joined: Apr 2017

there are 3 major divisions of PT---external beam, sealed and unsealed

I had the external beam called IMRT 44 times. My age is now 77 but i was 76 when I started treatment in Nov 14 of 2016.  Did Firmagon shot Oct 22 then Eligard on Nov 22.  RT called IMRT startred on Nov 14 and ended in Jan 16, 2017. 

I did ask both Urologist and Rad Dr's about the sleep apnia problem but they told me i needed to go to my family Dr. which I did on March 28th but when I told him he didnt say anything. My next Eligard shot and urologist appointment on May 9th.  The PSA blood draw is on May 2nd.  They called and apologized today because they had the DR appointment and Blood draw order for the PSA test both wrong dates.

As for the Hot flashes and fatigue , i can handle it ok.  I exercise a little but need more. I've gained 20 lbs weight since treatment and am trying real hard to cut back.

At this point in time at my age I have no idea if i'll ever make 80 to whatever.  The way i feel sometimes i'm lucky to get to 77.

My mom had terminal cancer at age 75 which she was operated on and had the Chemo done in 1989.  They removed her lymph nodes along with the tumor. I think it was squamous cell lymphoma.  They wanted to do another operation but she NO, no more. The oncologist said she had less than 6 months because it masticised.

Well a miracle must have happened she lived to be 90 !  

With all the research being done, they are making great strides in the fight against cancer.  Not in my lifetime but someday they will be able to cure all cancer so we all can live a happier more productive life. 

VascodaGama's picture
VascodaGama
Posts: 3029
Joined: Nov 2010

JJ,

You haven't explained why you think if you'll ever make 80, but I cannot see any reason for you not hopping to get to the 90th as your mother.

Probably this event with prostate cancer, the therapy, the lack of sleep and the disregard of the doctors to your appeal is causing you low mood and depression. This is still more aggravated when we get the Eligard shot that deplete our testosterone in circulation. It affects us and we never think it happening.

Flomax is typically prescribed by radiologist after RT to avoid urination retention (a cause of RT inflammation). This could be the cause of your frequency. In your shoes I would visit the GP again to inquire on the issue or I would stop the Flomax. If the situation improves then you can request for something else and advice at your next visit to the urologist (May 9).

The field of the IMRT (radiotherapy) may have covered the localized lymph nodes together with the whole prostate gland, nerves bundle and seminal vesicles. The  PSA (down from ≃18.0 to 2.0 ng/ml) is an indication of success but a portion of this value is still under the influence of the Eligard six month shot. You may still see the PSA going down further but the true nadir is only found when your hypogonadism recuperates out from castration.

Only state-of-art image exams can be trusted when looking for metastases. Traditional MRI and CT hardly detect cancer of small sizes. Luck makes part of the success and we should hope for that. Be positive. You may hope to live to be 90 too. It is in your genes.

Best,

VG

JJMWFF1955
Posts: 11
Joined: Apr 2017

I don't know. I am wanting either the Rad or urologist Dr to give me state of art image exams because i'm have some leg and foot problems but all they do is tell me i got to go to my family Dr.  So I did one visit a week ago to show him and talk about it.  I guess I will have to ask him if he will schedule the imaging to see if contained.  I really don't like using PSA or nadir to do active servailance because of that.

I've been on Flomax for 13 years and the Rad Dr still has me taking it.  The one good thing now is I can go and it sure feels good to be able to go.

During treatment i had a lot of problems going especially at night but now it is so much better.

VascodaGama's picture
VascodaGama
Posts: 3029
Joined: Nov 2010

I wonder where you live. The health system in Europe (NHS) uses a family doctor (GP) at front which is the physician in charge of commanding each one's health aspects. One just cannot avoid this guy if wants to get help from the NHS. Several patients from the UK have reported in this forum unpleasant confrontations with their GP for their unfriendly way when processing their cases. From your descriptions I would think that your GP will not give you the chance of having a state-of-art image exam. These guys can provide the referral for a PET/CT scan but need the approval from a specialist. You can try using diplomacy when requesting.
You need to complain strongly for getting something out from these people.

Regarding the urination, a retention case can be dangerous. Not voiding would damage the kidneys, placing the patient in the risk of death. You will find more pills for avoiding retention than pills for avoiding frequency. In any case, your PCa case involved a voluminous affected gland (7 positive cores out of 8) which could have been the cause of urination retention along the 13 years. That justifies your previous use of Finasteride (5-Alpha Reductase Inhibitour) which is recommended for treating hyperplasia.

The radiation therapy (IMRT Nov-Jan) should solve the problem by killing the cancer and shrinking the enlarged prostate gland. At beginning one experiences inflammation but latter it turns into a relief. These are the symptoms you report above. However, nobody can tell if RT has been 100% successful in just two months after administration. Your therapy also includes a portion of hormonal treatment with Eligard 6 month shots and such has not ended yet. One may be cured without knowing it exactly. You need to wait for checking your newer status via periodical PSA and testosterone blood tests. Meanwhile you can do other tests (via the GP) to check other situations. For instance, you should get a bone densitometry scan for checking any osteopenia/osteoperosis. Heart health and Diabettes. All typical in young 77 years olds afflicted with PCa.

If for any reason recurrence becomes apparent you may follow a salvage treatment that could include additional radiation (Jerry Brown Gov style), a simple HT protocol or a newer therapy now still on the drawing boards but available by that time.

What is the problem with your leg and foot? Can't you shoot the ball?

VG

JJMWFF1955
Posts: 11
Joined: Apr 2017

Hi, VG  What's my newer status?  1st I live in Indiana

Go on May2nd to get blood draw for PSA for my Urologist on the 9th. On my left foot the heel hurts like H@##.  I'm wondering if its Plantar Facisits. Sometimes it can be very painful to walk and sometimes not. I still feel some circulatory numbness in my feel, otherwise not feeling too bad.

Another guy on the Health forum said that he had a 9, negative ct and bone scan,  did rad and HT treatment and in 8 months started having pain in his shoulder and lower back. At first the thought it muscle but after scans found canceer spread to spine. He also said that after HT he put off rad treatment for several months and wish that he didnt' 

Looks like the problem after rad treatment is finding out soon enough if recurrence happened and getting it before it spreads. Can they do that with PSA tests or do they need to do imaging ever so often? 

VascodaGama's picture
VascodaGama
Posts: 3029
Joined: Nov 2010

JJ,

I wonder about the Gleason 9 case (negative scans) you refer above. In any case, it is not a surprise to me that a CT scan and bone scintigraphy scan did not detect his cancer. These image exams rarely identify metastases of small sizes. The PSA is a very good marker for prostate cancer (control) but it also is subjective as some aggressive types of PCa (Gs9 and 10) do not produce PSA serum or produce it in very small portions. The best is still to get an image exam, such as PET or mpMRI, with the latest contrast agents more affinity to prostate cancer cells, such as 68 ga PSMA or F18 choline.

Regarding your left foot, you may consider visiting a cardiologist too. The pain could be due to claudication in veins associated with calcification in the artery. Peripheral arterial disease is typical in the lower extremities and that can affect the feet. l have had such a feeling but now I am better since I changed my diet. The hormonal treatment also caused me sort of pain in my joints, like arthritis. Are you on any hormonal therapy?

Best,

VG

VascodaGama's picture
VascodaGama
Posts: 3029
Joined: Nov 2010

I think it better you keep this initial thread regarding your inquires so that the survivors can understand your case and provide better opinions.

Your inquire was:

" Do i need to see an oncologist instead of the Urologist because it appears that I need this PET/ct scan to see if it is contained

As commented above, you need to wait providing time to check if you are cured. A PET/CT image exam at the moment would not be practical to detect recurrence (active cancer) because many of those existing tiny cells are in the process of dying. Radiation affects the DNA of a cell and these lose the ability to divide when at its cell-division cycle, prohibiting its doubling. Prostatic cells take between two and six months to complete the cycle. Read this; https://www.quora.com/What-is-the-life-cycle-of-human-cell

I understand your worries regarding the field covered by the radiation protocol. Typically IMRT includes the localized lymphatic nodes. You can ask at your radiologist for a copy of his report on the RT administered to you. It should indicate what was covered.

Regarding the fussy with the dates for the administration of the Eligard 6-month shot; I would think that they administered you one shot before the radiation treatment in November, which effectiveness ends in May (six month). This may be the reason for the rescheduling of your appointment. The nurse has been incompetent for reserving you a consultation without checking your shot's schedule.
Surely the same could happen at a different oncologist. I think it better you prepare a list of questions for your next meeting. Here is an idea to help you in your list;

http://www.cancer.net/patient/All+About+Cancer/Newly+Diagnosed/Questions+to+Ask+the+Doctor

http://www.mayoclinic.org/diseases-conditions/prostate-cancer/basics/preparing-for-your-appointment/con-20029597

Best

VG      

JJMWFF1955
Posts: 11
Joined: Apr 2017

Hey, thanks for the advice.  That helps.

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