Please login or register.

Login with username, password and session length
Advanced search  

News:

Menopause Matters magazine ISSUE 52 out now. (June 2018)

twitter facebook blogger

Author Topic: Gynae problems... sorry, need to offload!  (Read 558 times)

grumpy2008

  • Member
  • *
  • Posts: 908
Gynae problems... sorry, need to offload!
« on: September 14, 2017, 10:50:55 AM »

Hi, ashamed to say it's quite a while since I was last here. Brief history... perimeno from early 40s with all the usual symptoms. Breast cancer diagnosis at 48, treated with surgery and then tamoxifen for 3 years, followed by anastrozole for 6 months. Both drugs either block the action of oestrogen, or inhibit it's production.

The tamoxifen caused my periods to stop (hurrah!) but there were side effects, including an overgrowth of the endometrium (I needed two hysteroscopies in that time, to check for changes).

I was switched to anastrozole because of the side effects. Anastrozole is for post-meno women, which they assured me I was. Haha! Six months after starting it, I began to bleed again. Immediately came off the anastrozole and a hysteroscopy was performed, this time showing some changes to the endometrium (hyperplasia without atypia). I was advised by the gynae department to take progestogen, to balance my oestrogen which was nearly 900pg/ml. Cancer consultant said 'No!', because my cancer is receptive to it. So I've been told to watch and wait.

So... another hysteroscopy planned for tomorrow, just 4 months after the last one. My oestrogen is still high (around 500 at the last test), and my other hormones raised too, so they think I'm neither pre- nor post-meno.

I feel rubbish. Bad headaches on and off, tiredness, mood swings, but the worst is the constant bleeding. Mostly spotting, but at certain times it's REALLY heavy, with clots, flooding... can't go out or do anything. Don't know when it's going to happen. This has been happening since March.

Rightly or wrongly I blame the drugs... I took them to protect me from cancer but my hormones are now completely messed up. I'm frustrated because I've already been through menopause while on the tamoxifen - hot flushes, night sweats, mood swings, the lot! Now I'm bleeding again, and have all the symptoms of oestrogen dominance instead. And I'm worried the cancer will come back (anxiety!).

And to top it all off, I haven't even seen the consultant gynaecologist yet! I tried to get an appointment, my doctor even tried to get an appointment, but he insists that seeing him would change nothing and I just need to go for the hysteroscopies! It's like they're waiting for me to develop something more serious (cancer) before they talk to me. The bottom line could be a hysterectomy or oopherectomy. (Has anyone had this without hormone treatment afterwards? Presumably I won't be able to take anything.).

Aargh. Sorry. I just want my ovaries to shut down, preferably naturally! I started periods age 11 and I'm now 53, so I think that's enough! Sorry for the long post... :-(
« Last Edit: September 14, 2017, 11:01:06 AM by grumpy2008 »
Logged

Hurdity

  • Member
  • *
  • Posts: 9389
Re: Gynae problems... sorry, need to offload!
« Reply #1 on: September 14, 2017, 05:03:50 PM »

Hi grumpy2008 - what is there to be ashamed about?! I remember you! Good to hear from you but sorry that you are suffering now.

I can't really help with your situation as it is a very specialised area - and I don't really understand how Tamoxifen works - haven't read anything about it, but there are other women who have had breast cancer on here. The other thing is I was just looking up about Zoladex for another member and it looks like this can be used for breast cancer patients instead of Tamoxifen ( only had a quick glance) - it shuts down the cycle so should not stimulate the endometrium. Here is the link again I posted for her: http://www.netdoctor.co.uk/medicines/cancer/a7798/zoladex-goserelin/ You would go into chemical menopause though so not sure what you would do about replacement hormones?  Again this would be a specialised area to ask your gynae/oncologist about. There is some information about both drugs and their relative efficacy in reducing risk of breast cancer recurrence here: http://www.breastcancer.org/research-news/20090226

I'm sorry I can't be of more help but just wanted you to know that someone is out there and sympathises!

 :bighug:

Hurdity x

Logged

coldethyl

  • Member
  • *
  • Posts: 740
Re: Gynae problems... sorry, need to offload!
« Reply #2 on: September 14, 2017, 05:14:28 PM »

I'm off out but will try and message later- I had hysterectomy for ovarian c last yr and turned out to have uterine cancer in early stage toox
Logged

coldethyl

  • Member
  • *
  • Posts: 740
Re: Gynae problems... sorry, need to offload!
« Reply #3 on: September 14, 2017, 07:10:11 PM »

Excuse typos as on phone whilst out - spare five before quiz starts - so if I understand right you had oestrogen and progesterone positive breast cancer hence the tamoxifen and anastrozole - I'm assuming that your bleeding is cyclical and combined with the high oestrogen the suggestion is you are not naturally menopausal yet - given that you are displaying hyperplasia but your oncologist refuses to sanction progesterone to reduce endometrium it would seem  prudent to ask for a referral re a hysterectomy and ovary removal as leaving your uterus in this state doesn't seem a wise option- as you are 53  you are already past the average age for meno - I personally have found that my moods etc have been easier to manage post hysterectomy rather than during the fluctuating hormones of peri - flushes haven't been that bad and of course without my womb the endless bleeding has stopped which improved my general well being as no longer anaemic - it is a major operation but in absence of tumour you should be able to have a bikini line cut which is less invasive than a radical hysterectomy - I am not a gynae but would think that they ought to be having a discussion on your behalf with oncology team about surgery in absence of hormonal treatment being allowed - in my experience all those involved in your care don't always speak to one another and you need to force the issue -  constant monitoring is a worry and in the end if they detect changes you are going to have to have hyster anyway- this way you can come off the oestrogen inhibitors - I am on a breast c twitter chat and artificially induced meno with drugs does seem harder than the real thing - I'm assuming you are already on biphosphonates for bone health.?
Logged

grumpy2008

  • Member
  • *
  • Posts: 908
Re: Gynae problems... sorry, need to offload!
« Reply #4 on: September 15, 2017, 02:17:46 PM »

Hurdity, thank you :) I would have posted in a cancer forum but I feel more comfortable here... just sorry I haven't been around more, before reappearing with a tale of woe! Thanks for the links, I will read through them carefully. It can be so mind-boggling sometimes, and hard to know what to do for the best. I really appreciate your kind thoughts.

Coldethyl (love the name!)... many thanks for responding :). Yes, the cancer was strongly oestrogen & progesterone positive. I've just come back from my (fourth!) hysterectomy and spoke to a consultant this time. She said pretty much the same as you, that if the results of this biopsy show any worsening of the situation (i.e. progression to hyperplasia with atypia) then a hysterectomy would be advised since it carries a 40% chance of developing into cancer. At the moment there is still chance that it will 'heal', although afterwards she said the lining still looks the same as it did last time I had a biopsy. Results will take a couple of weeks.

I have taken bisphosphonates, although at the moment I'm not taking anything (they really disagreed with me, and since I'm not on the anastrozole any more there's no immediate need to take them). I'd be happy to go back on them again though since they are also protective against cancer as well as good for bone health.

You're right, the constant monitoring is a huge worry, as well as down right uncomfortable! Happily the consultant I saw today was much more friendly and it became obvious they are now talking to the oncology team, although this has taken quite some time.

Thanks for listening / reading - helps to put things down in writing and know there are supportive and sympathetic people out there  :bighug:
« Last Edit: September 15, 2017, 02:23:12 PM by grumpy2008 »
Logged