Tamoxifen - what they don't tell you about ...

[mcgle]

Not a frequent visitor nowadays, but thought you should know about my experience with tamoxifen.

I opted to take tamoxifen rather than arimidex for a number of reasons. For the first three years, I would not even have known I was on this drug. Then I started to get bouts of cystitis, and these episodes got closer and closer together, effectively ruining my life.

Sometimes there was actually a UTI, but more often than not, my urine samples came back negative. Antibiotics seemed to take the edge off the pain, but not for long, no matter which ones I tried.

My GP (General Practitioner) said it was all down to the menopause, and that it was nothing to do with tamoxifen, as many postmenopausal women suffer from cystitis.

Reluctantly, I accepted this, and carried on taking the drug for the full five years, in spite of the crippling pain.

A month ago, I came off this toxic drug and surprise, surprise, the pain has gone and I feel like a new woman! I really thought this was going to be my lot from now on, and am so pleased to have my life back!

Why are these professionals so insistent they are right?

Mcgle (UK)

[hutchibk]

Glad you finally have relief...

But I am wondering why you stayed on Tamoxifen for the full 5 years? Studies that were released starting in 2008 showed that switching to an AI (Arimadex, Aromasin, Femara) after 2-3 years of Tamox was better long term than Tamox for 5 years and were shown to enhance the effects of the 2-3 years of Tamox... It seems your doctor should have known this and switched you (especially the moment you had pain and problems). Very curious.

When I was on Tamox, I was made aware that ovarian cysts and pelvic pain were a potential side effect, though not very common. Again, very curious.

[mcgle]

Thank you for your reply, Brenda.

I suppose because I was problem-free for the first three years, a switch to an AI was not considered necessary.

As I said previously, the hideous pelvic pain was not attributed to tamoxifen, but I am now convinced it was!

Onwards and upwards ...

Mcgle (UK)

[hutchibk]

Doctors who decide problem free is superior to science and research is curious to me...

But, again, I am very happy you are better and pain free.

[Rich66]

Seems many oncs were/are also very reluctant to admit debilitating musculoskelatal issues could come with aromatase inhibitors. Clearly people can have no symptoms to terrible symptoms with seemingly the same context...with so many of the cancer therapies.

[Jackie07]

I had thoulht I'd be switched to an AI after the prophylactic hysterectomy/oophorectomy in January, 2010 . I'd not had a 'cycle' since late 2003 in the midst of chemotherapy for my first bout of breast cancer.

But my oncologist put me back on Tamoxifen in summer, 2010. He's a 'man with few words', so I looked up the medical database and found research articles about how Tamoxifen had shown benefits even after 5 years.

The surgeon did comment afterwards that the uterus had already had signs of 'hyperplesia', a known side effect of Tamoxifen. Because of the cancer cluster in my family (possible 'HNPCC') and my own cancer history and genetic testing resut, I felt like I'd made a good decision to have the prophylactic procedure done.

[mcgle]

With thanks to those who replied.

I try not to let BC rule my life anymore, but thought it important to relay what happened to me when taking tamoxifen, even though cystitis is not a known side effect listed for this drug.

Mcgle (UK)

[hutchibk]

It makes me curious how I knew it was a very remote side effect? My onc's nurse was the one who told me the side effects, the more normal ones as well as the less likely ones... I just seem to remember her saying to let them know if I had pelvic pain (along with a few others), but they didn't expect it.

[mcgle]

In my case, as I said earlier, the pelvic pain was apparently due to the menopause; I don't think so!

[Jackie07]

Glad to know that cystitis is a known side effect of Tamoxifen (explaines why I've been suffering from it 'forever'.) Below is a comprehensive article on Tamoxifen put out today by Medpagetoday.com:

http://www.medpagetoday.com/Hematolo...stCancer/27786


Found another report on the subject:

Urologe A. 2003 Feb;42(2):255-62.
[Urological complications of endometriosis].

[Article in German]
Carl PE.
Source

Klinik für Urologie und Kinderurologie, Klinikum Deggendorf. urologie@klinikum-deggendorf.de

Abstract

Endometriosis (E) of the urinary tract is often not diagnosed at the beginning of the disease, particularly in cases with bladder wall involvement resulting in persistent dysuria and pelvic pain. Therefore, cystitis-like symptoms in younger women without evidence of urinary tract infections should be considered to be caused by E. Characteristic endoscopic findings may be missed and deep transurethral resection may be necessary for harvesting endometriotic tissue. This situation and improvement of diagnosis by ultrasound are demonstrated by a case report. The development of endometrial polyps in the uterus after tamoxifen (TAM) management is a well-known side effect of this antiestrogenic therapy. We observed a woman with endometrial polyps in the bladder after TAM. Endometriotic ureter stenosis in the absence of colics or other symptoms may results in irreversible loss of kidney function. Verification of the diagnosis is a common task of urology and gynecology. In three of six cases treated in our institution within 5 years, E of the ureter was first ascertained by the presence of ureter damage following surgical treatment of E. In two cases bowel E was present at the same time. Conservative treatment by suppression of ovarian function in most cases of stenosis of the ureter does not avoid the need for subsequent resection and reimplantation because of persistent fibrosis of the ureter wall.

[mcgle]

As I said before, tamoxifen is a very toxic drug!

Thanks for the info.

Mcgle (UK)