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Reply by NatR
13 Jun 2015, 2:04 PM

Love the photo, a glass of wine, sunshine, a smile...that's a caregiver doing it in style
hugs and thoughts for a relaxing weekend.
natr 💓 
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Reply by JennJilks
13 Jul 2015, 12:11 PM

What a trip that was last week. These are my notes....ya gotta be a secretary to keep it all straight!


Radiation oncology. Maybe local radiotherapy.


Back to original plan for waiting.


Q; if cancer has metastasized to lymph nodes, it's just moved. This is why still rising PSA readings. If they radiate, based on evidence of rising PSA and enlarged lymph nodes. Could potentially eradicate it. Radiation, if that's all the disease, can potentially cure him. Can put him disease free. May be reluctant without definite evidence: biopsy. Couldn't see anything.


CT scan showed enlargement, too.


Could do a CT-guided biopsy. No tissue diagnosis. Ruled everything else out.


Real plus is if that's the only site, could get rid of it.


Control is pretty good, andigen can keep it in check for 5 - 10 years.


Mon - Fri. 4 wks. @Queensway hospital.


 


1. Next appointment with Dr. C. Jan. 21. In six months.


2. Applied for radiation, asked for Queensway-Carleton hospital, upon advice of his 5 buddies. (Phoned next day: appointment July 13th, 12:30.


3. CT Scan, doing creatine blood test prior to the scan.


4. PSA test two weeks before Jan. 21, 2016, appointment. 
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Reply by NatR
13 Jul 2015, 1:21 PM

Oh my Jenn,

you do indeed  need to be a secretary not just for the writing but comprehending all the possibles and the reasons why to do this or not do that ..

my hat goes  off to you for your organizational skills. I wish I could be organized - period.
but really from all you said I got a glimmer of Hope in those words and hope is what carries us through life👍😃 

the appointments, travelling and mental strain of keeping everything in order is part of the caregiving burden that from the outside looks like insignificant details - but they all are energy grabbers.

you are a rock for your hubby
i have said it before  and I will keep on saying it. you are a grand gal, and a superb caregiver with funny moments and artistic skills that help you cope!
sending you hugs  and encouraging  all readers to grab moments, be proud of your support of loved ones:)
please write in with your thoughts on ideas to give yourself the gift of "value and support" like you give so liberally to others

best wishes Jenn and all readers.

its 95 f in northern ontario - this will be the 3rd day in a row! Keep cool;)
natR 
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Reply by JennJilks
15 Jul 2015, 1:43 PM

We're cold this a.m. (13 C.)
Happy for the cool down. Next project, building a dock.

Long day Monday. Went back to the GP for clarification as the two doctors gave different disease trajectories.
 


We're going back to Queensway-Carleton for a Bone Scan and a CT Scan ASAP.

His cancer is fairly unique, in that it's a Gleason 8, fast growing. AND

Normally, they radiate with the prostate there, without surgery having been done.

In his case, he's had surgery, and there is a risk for the scar tissue. With the dosage he needs, at this point, it could give him a colostomy bag or incontinence for the rest of his life. 

 

The anti-androgen hormone therapy, which our regular urologist/surgeon has talked about when he is at 4 or 5 on the PSA tests, the radiation oncologist wants to give him, but they would only last 3 years, max. The urologist thought anti-antigens would give him 5 - 10 more years. 

We don't go back to the urologist for 6 mos., which is a good sign, but not something the radiation oncologist embraced.

sigh.

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Reply by JennJilks
19 Jul 2015, 2:05 PM

Hubby phoned the urologist, who phoned us back at 9 p.m. to answer his questions.

If  the CT Scan and/or Bone scans are positive, it means the cancer cells have metastasized outside the former prostate area, into the body. He has cancer in his lymph nodes, and we can't do radiation if it has spread. It is likely that prostate cancer spreads to the bones, and this is what we are searching for.
They can't radiate if it has spread, as you need a small target. 

Then, the next problem is that the radiation may damage scar tissue, where his prostate was removed. Also, it could damage his colon, and he could be incontinent. It's a unique situation. He doesn't want to live with a colostomy bag or permanent catheter at his age. Some people live with it for years, but he cannot bend over to empty a bag. 

It's troubling, but we keep smiling.
We see the radiation oncologist next week. 
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Reply by NatR
19 Jul 2015, 2:49 PM

Hi Jenn

it is all so much to take in isnt it?  Possibilities, treatments, news to wait on...so much depends on something else, and that depends on something different for treatment...its a whirlwind of worry for so many.

I admire you and hubby for your daily focus on doing something wonderful, being together, just enjoying each day.

How many people waste their whole lives worrying, and missing wonderful moments to share.  I am glad you have such spirit and love to keep you going.  I love your photos and your silly goofy faces...it shows me that you are distracting your worries into positives.

Keep us posted...and have a wonderful day
Up here in northern Ontario it is windy and sunny.  I love days like this...no need to plug in a fan, just let the wind blow.

Hugs to all readers...sorry I am infrequently on here...summer is a busy season and I try to take advantage of the nice weather...and do things outdoors when I can.
NatR 
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Reply by JennJilks
26 Jul 2015, 2:49 PM

Well, Bone Scan and CT Scan, done. We're back to the radiation oncologist. 
We'll hope the tests are negative, in terms of metastasis of cancer cells. We know it's in his mesopelvic lymph nodes.
We've got copies of previous tests. We're going to see what our treatment plan might be.
I think it might be anti-androgen therapy. By blocking testosterone hormones slows the speed of the growth of prostate cancer.
Meantime, we are keeping busy with grandkids, our 4 cats, and enjoying each day.

 
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Reply by JennJilks
05 Aug 2015, 7:42 PM

There we go, or stop. Decision made.
We are not moving forward with radiation. Too many risks, and side effects possible. (Catheter, colostomy bag)
His PSA numbers are rising, only slowly. We are going to sit back, relax, and take some time to be oursleves. My blood pressure is up, and I just want to breathe.
Hubby has written than you notes to our oncologist and GP, for their consults.
 Deep breathe. 
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Reply by NatR
05 Aug 2015, 7:56 PM

Hi Jenn,

It is hard to decide, but once you have there is a relief that happens...and I hope that you are both able to relax a bit, breathe and just focus on other things...for awhile.

Isnt this a good time to take up that friend or neighbour on minding your cats and take off for a bit?  go have a breather...summer is skidding by us very fast...it is so cold up here in the north that I am considering putting on a sweater...and thats inside!

Have a good week.
Hugs NatR 
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Reply by JennJilks
02 Sep 2015, 12:52 AM

What a delightful month it has been. We took Nat's advice and went off to Vancouver to see our latest granddaughter. That makes three.
We took a total break. We got back and had to go back to the doctor who performed the colonoscopy last Feb. for some long, silly reasons, for poke #7. Hubby is very patient.

NOW we taking it easy until December when we go back for another CT Scan to see how his cancer has progressed.
This fall, we plan to look after one another. 
We went out for lunch in Napanee, after going to Kingston for some specialty products for hubby. You might like to read our story. I still have warm fuzzies!
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