Introduction and how to take a short ... - Advanced Prostate...

Advanced Prostate Cancer

11,247 members13,621 posts

Introduction and how to take a short cut to maPc and a very rare Prostate Cancer


I am 81 year old who has gone from being, supposedly, free of Pc in May 2016 to having Pc Gleason 3+4=7 in June and then Gleason 4+5=9 with metastases in August 2017.

In 2014 I had a DRE and Ultrasound of the bladder which were clear so went on medication (Flowmaxtra) to improve my peeing. I has PSAs regularly which were about 1.0 but but in May 2016 my peeing became more difficult and I was recommended to have a TURP.

In June I had the operation and a biopsy was carried out on the removed material. This came back G 3+4=7 but the PSA was only 1.03. A CT scan and Bone Scan showed that I had no metastases.

I was put on watchful waiting and had PSAs after 3 and 9 months which were both below 1.0. By now I had a lot of blood in my urine which was put down to my cycling and blood thinners. I complained to my urologist who said that a cystoscopy would put an end to my concerns.

The cystoscopy was interesting as the urethra was blocked by a bleeding mass of tissue. I was in exploratory surgery as soon as my blood thinners allowed.

On August 2 2017 biopsies were taken from the removed tissue to ease the blockage. The results were devastating. The were G 4+5=9 and a Bone Scan showed that I had metastases in my acetabulum, pelvic girdle and right ankle. The biopsy also showed a rare cancer was present in the sample.

From the European Society of Radiologists:



• This is an exceptionally rare variant of adenocarcinoma with giant pleomorphic


• Few cases have been reported. In the largest series, patients ranged in age

from 59 to 76 years.

• Gleason score 9 is usually seen in many cases of adenocarcinoma.

• The disease course is very aggressive


I sought a second opinion from a medical oncologist who agreed with my urologist that the only treatment was ADT and palliative radiation as required to ease pain from the metastases. He also advised that he would not recommend chemo due to age.

So now I am on Zoladex and suffering from extreme fatigue. My bike has not been ridden since last October but at least I didn't need am RP

13 Replies

It depends on what your comorbidities are. I don't think you should be excluded from chemo just based on age, but I also don't know what kind of chemo they use against giant cell (carboplatin? etoposide?). Here are some articles that say that, at least for normal PC, chemo should not be ruled out in the elderly;

I suggest you email those links to your oncologist and ask to discuss at your next meeting.

BrianE in reply to Tall_Allen

Ironically my Urologist has more knowledge of giant cell cancer than my Medical Oncologist as she contributed to a paper on giant cell cancer of the bladder which was carried out by the pathologist who prepared biopsy report:

Paper about 121 shows K S Hoyle my urologist.

My MO says that the standard treatment is ADT which, when it fails, should be followed by chemo o,r if unsuitable, Zytiga or Xtandi. The latter are now approved by the Australian Pharmaceutical Benefits Scheme and heavily subsidized about $A39.00 against $A3,900.00.

Due to my age and comorbidities , Atrial Fibrillation and Type 2 diabetes chemo is not recommended.

Now I stay on ADT until it fails .

Tall_Allen in reply to BrianE

The problem with very rare PC variants is that there is so little history in treating it. You were lucky to find a doctor who knows at least something about it. In the US, Zytiga has recently been approved for early use along with ADT, so one doesn't have to wait for ADT to fail first. But I don't know if that has been approved in OZ yet. If you can't get Zytiga yet, maybe you can get ketoconazole, an older drug that stops the enzyme needed for androgen synthesis in the adrenals. There's also the estrogen patch, if giant cell has estrogen α receptors.

you should also be on Zytiga ...just as good as chemo

BrianE in reply to gusgold

If I develop castration resistant prostate cancer I will likely go on Zytiga or Xtandi.

I am so sorry about your diagnosis. There is a lot of good advice here. My husband was also diagnosed with a rare form of Prostate Cancer. For his type, neuroendocrine, the oncologists use a lot of the same treatments that they use for adenocarcinoma.

You look like you are in really good shape for 81. I would hope that this would give you more options than your standard 80+ year old.

Do you have much pain from your bone mets ?

Try to find a really good oncologist who specializes in prostate cancer, and is willing to try things for you.

Exercise might help with the fatigue. My husband has found that ginseng helped him.. especially when he was going through chemo.

Tons of hugs and prayers. You can beat this!

Maybe you can find someone who knows something about that form of prostate cancer by calling some of the research centers. See: for a list of them in the U.S. I'm not real optimistic about it but maybe you can find someone who is doing research on this form of cancer and will welcome a new patient to try to work with on treatment.

I looked up PLEOMORPHIC GIANT-CELL ADENOCARCINOMA PROSTATE CANCER in Pubmed but only saw 11 hits, most of them in European journals. If you're not familiar with it, Pubmed is a service run by the National Library of Medicine that indexes pretty much all of the world's medical literature. See:

I wish you the best of luck however it goes for you.


BrianE in reply to softwaremom00

Thank you for the support. I walk my little dog three times a day.


You look awful healthy and fit in your picture---If chemo would work for a man of 70 years old---I would fight for it, if it is indicated for your rarity.

I was told by age I was too old for an RP---based on my Pathology--which is also very rare; but not as rare as yours---I fought and we went ahead---The Lupron/Zytiga/Prednisone may offer an alternative---as Gusgold suggested.

Prayers and Good Luck--there are lots of other options---Lu-177, targeted drugs against mutations,

High T/BAT--protocols---and there is Car-T, and Clinical Trials.


BrianE in reply to Nalakrats

Thank you


I deal with atrial fibrillation too. I take CoQ10, L-Arginine, and L-Carnitine supplements. They seem to reduce the episodes as opposed to just taking the prescription meds I have for that.

BrianE in reply to WSOPeddie

Unfortunately I have been in Permanent AF for three years and take flecainide to attempt to control my heart rhythm. I had an AF induced stroke 6 years ago and even before my Pc I had a very low energy level output but could still cycle reasonable distances (30-40Km) and walk for 90 minutes. Now it is 2Km and 20 minutes.

WSOPeddie in reply to BrianE

I guess everyone is different. I was in occasional AF. Changed meds to propafenone (AKA rythmol). It took me out of AF but put me into continuous atrial flutter. Got a flutter ablation operation (not quite as invasive as AF ablation, and not a long waiting list). Now AF is quite well managed. Sad to hear the term 'Permanent AF' -- that has to be hard to deal with. Do try those supplements. Worth a try anyway.

You may also like...