AFF Cancer Survivors Thread

[love_the_life]

Well, there’s no appropriate button for that. Although maybe I should click Agree for the sticker on the coffin. . A few rocky months love_the_life. Positive thoughts.

A few cosmos and G&Ts at the local pub seemed to have dulled the senses a tad.
Hope your friend's son is starting to travel better with the chemo, Pushka.
Once things are sorted will post what's happening.

 

[JohnM]

All of this bowel cancer talk has made me dig out my screening kit I got 6 months ago, do the samples and send them off. Hopefully a positive outcome will be shared by my doctor in due course.

Is it a 'positive' or a 'negative' result that you are looking for? The medicos say 'positive' (as in 'positive margins') when they have not cut all the cancer out with a clear boundary of non-cancerous cells showing a 'buffer zone' in the piece removed.

 

[love_the_life]

Is it a 'positive' or a 'negative' result that you are looking for? The medicos say 'positive' (as in 'positive margins') when they have not cut all the cancer out with a clear boundary of non-cancerous cells showing a 'buffer zone' in the piece removed.

My read was that the result woukd be negative for bowel cancer indicators, based on the bowel cancer screening kit. QFWP may mean something different though!

 

[Pushka]

A few cosmos and G&Ts at the local pub seemed to have dulled the senses a tad.
Hope your friend's son is starting to travel better with the chemo, Pushka.
Once things are sorted will post what's happening.

Alcohol is good.

Negative for a bowel screen means negative for blood. Which is a good thing.

 

[love_the_life]

Alcohol is good.

But now we’ve just had a fire alarm - down 7 flights of stairs! Luckily only an electrical fault.

 

[Pushka]

But now we’ve just had a fire alarm - down 7 flights of stairs! Luckily only an electrical fault.

Oh dear. Nothing like a fire alarm and stairs to get you into sleep mode. I’d be on the phone to the Body Corporate Manager and give them an earful

 

[love_the_life]

Oh dear. Nothing like a fire alarm and stairs to get you into sleep mode. I’d be on the phone to the Body Corporate Manager and give them an earful

The BC chair was there to let the Firies in. His wife followed him downstairs after a small interval when the alarm had not stopped.
(For clarity MrLtL is the chair).

 

[Pushka]

The BC chair was there to let the Firies in. His wife followed him downstairs after a small interval when the alarm had not stopped.
(For clarity MrLtL is the chair).

You mean you didn’t beat him to the Firies?

 

[QF WP]

Yes, I was positive about getting a negative result. I would have been negative in getting a positive results.

 

[love_the_life]

Well, it's been a bit of an up and down time over the past few months. Pushka has alluded to things occasionally which may have made people wonder. MrLtL has been home from hospital for 5 days after a prostatectomy and removal of lymph glands about 10 days ago. So far things are going very well - he can attest to the value of Kegel exercises and apart from being a bit tender at the scar site is feeling well. Unlike JohnM he did not go the robotic pathway as it seemed that the chap here does not have a great deal of experience and the urologist he saw was very very experienced. It would appear that the tumour was confined but was comparatively large (given the size of the prostate!). Basically it was a rapid increase in PSA, followed by MRI, then biopsy then surgery. Fingers crossed for a zero result from the next PSA test in 5 weeks. Boy, they sure know how to charge! I do wonder how people without access to ready funds manage.

 

[ellen10]

Glad the op went well, sounds like it has been a big few months. Fingers crossed for good results in 5 weeks time.

 

[JohnM]

Well, it's been a bit of an up and down time over the past few months. Pushka has alluded to things occasionally which may have made people wonder. MrLtL has been home from hospital for 5 days after a prostatectomy and removal of lymph glands about 10 days ago. So far things are going very well - he can attest to the value of Kegel exercises and apart from being a bit tender at the scar site is feeling well. Unlike JohnM he did not go the robotic pathway as it seemed that the chap here does not have a great deal of experience and the urologist he saw was very very experienced. It would appear that the tumour was confined but was comparatively large (given the size of the prostate!). Basically it was a rapid increase in PSA, followed by MRI, then biopsy then surgery. Fingers crossed for a zero result from the next PSA test in 5 weeks. Boy, they sure know how to charge! I do wonder how people without access to ready funds manage.

The most important thing in ensuring a good outcome is not the method, but the experience of the surgeon. They tend to specialise in one or other of the methods. I encourage MrLTL to be patient as he recovers. It can feel slow and then almost suddenly things improve. I'm coming up 11 weeks since my op and recovery is to all intents and purposes complete.

You're right about the cost and wondering how some people can manage it. Add a non-refundable $2.5K for the robot. I had seven years of active surveillance to prepare for the out-of-pocket expenses!

Feel free to PM me if you or MrLTL have any queries.

 

[love_the_life]

The most important thing in ensuring a good outcome is not the method, but the experience of the surgeon. They tend to specialise in one or other of the methods. I encourage MrLTL to be patient as he recovers. It can feel slow and then almost suddenly things improve. I'm coming up 11 weeks since my op and recovery is to all intents and purposes complete.

You're right about the cost and wondering how some people can manage it. Add a non-refundable $2.5K for the robot. I had seven years of active surveillance to prepare for the out-of-pocket expenses!

Feel free to PM me if you or MrLTL have any queries.

Thanks JohnM. Pleased to hear you are well recovered, MrLtL is pretty active and fit, not overweight, and only (?) late 60s so is looking for a good outcome. Actually he went for a short walk only a few hours after surgery. It was interesting with drains, drips, catheter etc! But he wanted to move at least a little. His surgeon only left the catheter in for 5 days, with a cystogram to check there was no leakage and then after it was removed a series of ultra sounds to check the bladder was working correctly. All good. My cousin had radiotherapy last year for the same thing as he is only late 40s. Husband decided that he didn’t want to go that path. Too many unknowns and felt surgery was the way to go. Gleason was 4 plus 3 or vv - can’t remember.

 

[JohnM]

T MrLtL is pretty active and fit, not overweight,

Very important...

 

[tgh]

In my dotage , the psa result is always of great interest.
The GP, noting that it was time for annual blood tests , asked if I wanted (another) psa.
I said ; of course .. why would you ask.
He said ; some folks do not want to know.
I said ; ……………...amazing…..

 

[k_sheep]

4+3 vs 3+4 is a big distinction - the former will get surgery, the latter won't (VERY broad generalisation). Bulk size of tumour is of less importance than having negative lymph nodes and the grade so that's good news!

 

[love_the_life]

4+3 vs 3+4 is a big distinction - the former will get surgery, the latter won't (VERY broad generalisation). Bulk size of tumour is of less importance than having negative lymph nodes and the grade so that's good news!

Yes I know that they are totally different but the brain is mush! They’ve been so many different things going on over the past couple of months. And I suspect I get them mixed up.

 

[JohnM]

4+3 vs 3+4 is a big distinction - the former will get surgery, the latter won't (VERY broad generalisation). Bulk size of tumour is of less importance than having negative lymph nodes and the grade so that's good news!

I was 3+3, with a small focus, for 7 years. I had five biopsies (that includes the initial diagnosis biopsy) and two MRIs over that time monitoring it (numerous biopsies can cause their own problems for the surgeon by causing adhesions on the nerve sheath.)

My trigger point for removal was always when Gleason 4 showed, without parsing it to 3+4 vs 4+3. That happened last November (it was 3+4). Of course, it is arguable that I could have waited longer but that would have involved more biopsy, perhaps more 'I wonder what the rate of progression is?' thoughts, plus getting that much older (I'm 68).

Everything requires a balance, but I stuck with the trigger point I had set years earlier.

 

[Pushka]

In my dotage , the psa result is always of great interest.
The GP, noting that it was time for annual blood tests , asked if I wanted (another) psa.
I said ; of course .. why would you ask.
He said ; some folks do not want to know.
I said ; ……………...amazing…..

Isn’t it that prostate cancer can exist and not really create many significant issues and some men have it and don’t ever receive the diagnosis but pass away from something else?

 

[JohnM]

Isn’t it that prostate cancer can exist and not really create many significant issues and some men have it and don’t ever receive the diagnosis but pass away from something else?

Yes - as they say: many men die with prostate cancer, not of prostate cancer. But, my understanding is that it is a particularly nasty cancer if it escapes the prostate and metastasizes elsewhere - causing a very painful demise.

I had it for seven years before acting on it - because things changed from (apparently) benign to potentially aggressive.

Unfortunately, diagnosis and monitoring is invasive (unlike breast cancer). Therein lies the rub.

PSA testing is NOT diagnosis. It is merely an indicator that something may be amiss - and it may create more problems than it purports to or is believed by some to solve... An infection may cause the PSA level to shoot way up, only to go way down once it subsides (my brother being a case in point).