AFF Cancer Survivors Thread

[Major]

Stitches out this morning from a Bowens cancer which was cut out from the back of my leg.

That's the third one of these little buggers I've had removed

 

[love_the_life]

Hopefully there won't be a fourth.

 

[QF WP]

Nice to see some new "members" of this thread sharing their stories. Bowens was very similar to my recent (12 months ago) superficial BCC that were treated by Aldara cream. Time to head back to my skin cancer clinic to have a review.

Tomorrow is not going to be easy, so doubt I'll be online (and tomorrow afternoon will be a haze of alcohol). Been asked to be one of my uncle's pallbearers. Was honoured to be chosen alongside my cousins to do one of the final things for their father. Have to step up and make my uncle proud (as well as my dad, who won't be physically or mentally capable of doing it).

 

[drross]

Nice to see some new "members" of this thread sharing their stories. Bowens was very similar to my recent (12 months ago) superficial BCC that were treated by Aldara cream. Time to head back to my skin cancer clinic to have a review.

Tomorrow is not going to be easy, so doubt I'll be online (and tomorrow afternoon will be a haze of alcohol). Been asked to be one of my uncle's pallbearers. Was honoured to be chosen alongside my cousins to do one of the final things for their father. Have to step up and make my uncle proud (as well as my dad, who won't be physically or mentally capable of doing it).

good luck QF WP

 

[love_the_life]

Nice to see some new "members" of this thread sharing their stories. Bowens was very similar to my recent (12 months ago) superficial BCC that were treated by Aldara cream. Time to head back to my skin cancer clinic to have a review.

Tomorrow is not going to be easy, so doubt I'll be online (and tomorrow afternoon will be a haze of alcohol). Been asked to be one of my uncle's pallbearers. Was honoured to be chosen alongside my cousins to do one of the final things for their father. Have to step up and make my uncle proud (as well as my dad, who won't be physically or mentally capable of doing it).

Will be thinking of you - it won't be an easy day, so make sure you look after yourself as well.

 

[rogerkambah]

Boy that four weeks has gone quickly. Hopefully the scans will come back as hoped. Fingers and toes crossed for you.
Good to hear you are feeling better.

Time flies - when you're having fun.

 

[QF WP]

Definitely fingers crossed for your CT scan...and hoping you're not pushing your left kidney to work too hard...

Got to love scars as a reminder - see mine every morning in the mirror.

Just noticed this thread a couple of days ago.

As some here would know, 4 weeks ago I underwent surgery to remove a large tumour and its place of residence, my right kidney. Have a 30cm scar as a memento since it was too large to remove via keyhole surgery.

My first post operative CT scan will be next week and with any luck (that I don't usually have) the few nodes in my lungs will be shrinking or at least not growing, otherwise I'm into chemo.

Feel much better though than I did pre-operative, so hopefully that's a sign and I'm a survivor.

 

[QF WP]

@JohnM, do you want to share your story here...

 

[rainbowgirl]

My mum survived three types of cancer before finally dying of side effects of liver cancer.

I'm getting lots of extra check ups from the GP to look out for early signs of various cancers. I keep wondering whether I should have those genetic tests which check if you are predisposed to cancer.

 

[Buzzard]

Whilst not what I would consider a serious cancer, I've just had my 4th BCC removed, previously also a largish SCC removed. I get checked every 6 months but I certainly urge everybody here get checked at least annually.

 

[Pushka]

My mum survived three types of cancer before finally dying of side effects of liver cancer.

I'm getting lots of extra check ups from the GP to look out for early signs of various cancers. I keep wondering whether I should have those genetic tests which check if you are predisposed to cancer.

Well, ask yourself what you would do with the test result. Eg the BRCA gene. If you aren’t wanting to have a double mastectomy and hysterectomy then I don’t see the point of testing.

 

[blackcat20]

Whilst not what I would consider a serious cancer, I've just had my 4th BCC removed, previously also a largish SCC removed. I get checked every 6 months but I certainly urge everybody here get checked at least annually.

I had a check recently. I've got one suspicious spot that needs to be biopsied before a decision is made.

 

[Major]

Whilst not what I would consider a serious cancer, I've just had my 4th BCC removed, previously also a largish SCC removed. I get checked every 6 months but I certainly urge everybody here get checked at least annually.

I have 2 more SCC's coming out over the next 2 weeks. That's about 40 carcinomas now and 1 melanoma.

 

[JohnM]

OK, QF WP.

I had my prostate removed on Tuesday afternoon and came home yesterday morning.

The story started seven years ago when a moderately elevated PSA score (BTW, a VERY unreliable indicator of prostate cancer - a rise merely suggests further investigation is prudent) had my GP refer me to a urologist. He, in turn, felt that the level/age combination warranted a biopsy and a single, small, localised, low-grade (Gleason Score 3+3) focus of cancer was detected, with no indication of extra-prostatic extension.

OK, first up: it's not an emergency. So what to do? First: STOP (ie. don't panic), THINK and RESEARCH (and I don't mean Dr Google (although, carefully handled, useful material is there) - although as a scientist I do have the advantage of being able to source original literature not available to people outside research institutions or academia).

Prostatectomy is potentially fraught with many adverse consequences that are not to be taken lightly or without good physical and mental preparation, if rapid intervention is not required.

So as an AFFer, what's the first thing to do after some broad reading? Why, jump on a plane of course and go to French Polynesia for a couple of weeks to have a bit of a think about things over a few wines on Bora Bora etc. .

First up on return was to ask the diagnosing urologist about what was then the quite new robot-assisted laparoscopic prostatectomy technique. He was an older open-surgery specialist but was happy to refer me to his younger colleague in the same practice who was a RALP specialist (at that time with 160 operations under his belt - by the time he got to me this week it was around the 900-mark).

The first thing is that, in the hands of a skilled and experienced surgeon, there is no statistical difference in outcomes between open and RALP prostate surgery. And it's really experience - the number of times they've done the operation - that explains most of the variability. However, as someone experienced in using microscopes for fine dissection (anyone like to know how to dissect the ovaries of a fly? ) the idea of doing the operation essentially under microscopy appealed, as did the minimally-invasive nature of the procedure, so I put myself under the RALP guy. But it is a procedure that comes with very significant out-of-pocket costs.

Around that time, mounting world-wide concerns about severe over-treatment of prostate cancer had reached a peak, leading to the concept of ‘Active Surveillance’ for non-urgent low-grade and small internally-definable cancers. While it was always close to inevitable that I would eventually have to have the organ removed, there are the significant urinary continence and erectile function quality-of-life issues that at risk with prostatectomy. So there's a trade-off between being shot of the cancer immediately against the significant risk of adverse side effects.

It is known that some men emotionally can't handle the idea of the big-C being in their body and just want done with it, so Active Surveillance is not for everyone.

Essentially, AS means monitoring by roughly annual biopsies, although in the time I was on AS, improvements in the power of MRI devices meant that the non-invasive MRI could be put into the mix - as more of a check than a definitive measure. The downside with repeated biopsies is they can leading to scar tissue and adhesion of the sheath that surrounds the prostate and which contains, particularly, the nerves that control erectile function. This can make the 'nerve-sparing' ideal of modern prostatectomy surgery a little more difficult (the analogy sometimes used is peeling an individual grape).

In the end, I had 5 biopsies (3 trans-rectal and 2 trans-perineal, as each on its own tends to have a mutually-exclusive 'shadow' area, and 2 MRIs).

My clearly-defined trigger point for surgical intervention was if the grade in any part of the bad bit went to 4 in the two-part Gleason Score. That happened to a small extent at last biopsy in late November last year (GS 3+4). It was clearly indicative that after all those years something was changing for the adverse - so the booking for surgery was made the day I discussed the biopsy results with my urologist.

It has been a calm, rational, evidence-based, well-planned process totally consistent with modern thinking on the issue for someone in the non-urgent category.

That’s one reason I’m happy to air my experience freely - and to interact directly with any guys out there who may be facing decisions on the issue.

An interesting thought came to my mind while under the shower this morning: I've spent 10% of my life to date on Active Surveillance for prostate cancer .

Of course, it’s all different for someone suddenly diagnosed with extensive, high-grade cancer where immediate action is clearly required.

My catheter comes out next Tuesday. I reckon I was as well-prepared as I possibly could be, but that will begin the real test of my physical and pelvic-floor muscle exercise preparation....

 

[Pushka]

Thanks for sharing JohnM.

We had a friend a few years ago go through the exact same process as you did - careful monitoring then finally robotic surgery. He is fully fit and well although I haven’t explored other aspects as they are very private people.

After surgery he felt well, and looked much better than pre surgery, but regular blood monitoring suggested he needed further surgery. The surgeon noted however that all his patients showed rising blood levels which as a surgeon concerned him. Friend sold his business and house as it looked very grim. The surgeon probed further into the blood laboratory. Turned out their levels were wrong and that further testing showed no one was at further current risk. There is currently I believe a class action in place.

Gah it’s paywalled.
Nocookies

 

[Buzzard]

I had a check recently. I've got one suspicious spot that needs to be biopsied before a decision is made.

Do it BC20, that's how my SCC was found. The quicker something is found and treated, the simpler and perhaps less disfiguring the surgery will be.

 

[blackcat20]

Do it BC20, that's how my SCC was found. The quicker something is found and treated, the simpler and perhaps less disfiguring the surgery will be.

They asked me to wait three months to see if it would heal first as it was a sudden appearance of a scab on my shoulder.

 

[JohnM]

Thanks for sharing JohnM.

We had a friend a few years ago go through the exact same process as you did - careful monitoring then finally robotic surgery. He is fully fit and well although I haven’t explored other aspects as they are very private people.

After surgery he felt well, and looked much better than pre surgery, but regular blood monitoring suggested he needed further surgery. The surgeon noted however that all his patients showed rising blood levels which as a surgeon concerned him. Friend sold his business and house as it looked very grim. The surgeon probed further into the blood laboratory. Turned out their levels were wrong and that further testing showed no one was at further current risk. There is currently I believe a class action in place.

Gah it’s paywalled.
Nocookies

Rule 1 if something looks odd: repeat the measurement (preferably at another place).

 

[Pushka]

Rule 1 if something looks odd: repeat the measurement (preferably at another place).

Yes. I was about to say to get tests done at different labs. It drives the medicos barmy though but it’s what I do when things aren’t adding up. While different labs use different ranges, the overall ‘yay or nay’ should be the same.

 

[Denali]

Glad to read your post, JohnM. Well from Bora Bora onwards because before that I was very concerned for you and I hope all goes well from here on.

I had numerous arguments with my husband to go to the doctor and be tested and the poop stick thing in the mail - why some men fight testing, no idea but hes a fighter (same with doing our will). He finally had testing last year.

Maybe if I enticed him with Bora Bora, he might be more open to the idea of regular testing.