On Tamoxifen - get ovaries removed and hysterectomy

[catchpole]

Hi Duchess 1

I feel as breast and ovarian cancer so connected, so relieved when i had my hysterectomy  for fibroids 7 years ago i had my ovaries removed too.   Ive 2 friends with BR gene,.  Ones whole family apart from her mum who supposedly didnt have cancer and her youngest cousin who has had it twice and is still alive, died from breast cancer many years ago in 30s and 40s,  She has just at 67 been diagnosed with ovarian cancer, was never gene tested,  which had spread, had op awating chemo,.  The other friend whos mum and and aunt both had breast cancer, and was gene tested along with her sister and cousin,.  All had the gene, and all 3 had breasts removed at a young age, her sister they found had a cancerous lump, but still alive 18 years later. Sister and cousin had ovaries removed, my friend who is 41 has been told must have them removed soon, has to have scans every year.  The connection seems very great, so id say a hysterectomy is a small price to pay for peace of mind. I got over mine really quickly and i was 60, now i feel relieved i had it done then.June

[catchpole]

Hi Faith,

Interesting i read other day about a woman with terminal breast cancer who went to Germany to a private clinic and had a kind of chemo that targeted just the cancer cells not messed up the rest of your system. Shes still alive 3 years later   Id very much like to know why we in UK dont have this kind of treatment,.  My oncologist told me that as the per centage risk of my cancer reoccuring was so small with having chemo,. he wouldnt reccomend it as my nodes were clear, Thank god they were as he said cause im so petite he felt would do me more harm than good, and could debilitate me for years, june

[Duchess1]

I've just been searching for links on this topic as I had BC, lumpectomy in August 2013 followed by radiotherapy and 5 maybe 10 years of tamoxifen. Just had surgery, laparoscopic bilateral salpingo oopherectomy which means both ovaries and Fallopian tubes removed due to a large cyst on one of my ovaries. Surgery was advised in order to prevent ovarian cancer as apparently there is a higher risk if you've already had breast cancer. On reading these threads I am worried now that there is still some risk due to not having a full hysterectomy (I was given the choice and decided that a hysterectomy was too drastic). Has anyone had same concerns? I am seeing gynae consultant on 20/3 for results of histology etc. any help before then would be appreciated.

[skinnyminx]

Best wishes to everyone facing futher surgery in the shape of hysterectomy and/or oophorectomy.  Personally, with a family history of ovarian, and other cancers  I was glad to see the back of the my ovaries at the age of 48.

We're going a bit off-topic here but to pick up on your points globalnomad... there are risks and potential side-effects to every type of medication, whether this is for cancer or any other disease/disorder/condition.  It's all a balancing act and we don't have to take anything we're prescribed - we have the choice.

I don't know what breast cancer drugs are available in the States? Or Switzerland, Sweden, Germany?  Perhaps members of this forum who live in any of those countries could tell us if there are some wonderful alternatives to tamoxifen/letrozole/anastrazole/exemestane that we don't know about?

I am at a point where I accept that treatment options in countries outside UK are irrelevant to me as I do not have the resources to access healthcare in any other countries.  In fact, I'd never have had to deal breast cancer at all if I'd lived in any of those countries because I wouldn't have survived serious illness in infancy as my parents wouldn't have been able to afford the healthcare in those countries.  Via my taxes I have contributed and continue to contribute to the running costs of the NHS which has saved my life on several occasions. 

By the way, I am not aware that endometrial cancer is a known side-effect of aromatase inhibitors.  It's not in the Patient Information Leaflet.      

[Faith50]

Well said global nomad. I once read that were it not for the money grabbing drugs companies, who are determined that we keep buying the chemotherapy drugs etc., cancer would have been cured years ago!

[globalnomad]

Seems to me dreadful that a so called treatment, tamoxifen, is causing cancer in endometrium, resulting in major operation ....however on checking aromatase apparently the risk is there too!! Do the professionals just want us to write off more internal organs till there's nothing left? is this hormone treatment the best they can do? Or is it a question of cost? Wonder what's available in the States? Or Switzerland, Sweden, Germany? Seems grim....awful side effects such as sweat, insomnia, depression and now this? They can stick men uselessly out in space stations costing billions.....save the dough for cancer drugs that dont cause cancer. It's a no brainer!

[Faith50]

Yes I'm avidly watching this post too. I have stage 3/4 endometreosis and fibroids and am wondering what to do when I get started on hormone treatment. Sorry you are having problems and are facing a hysterectomy. I suspect this will happen to me too.

Faith50

[BellaLasagne]

Hi all,

Can I join you as I've just been searching for similar threads and this is the only recent one?

I've now in my 6th year of Tamoxifen, so due to do the full 10 years.  I was 43 at diagnosis so definitely pre-men, now I'm 49 so who knows, especially as I had chemo.

I haven't had periods as such since my chemo 5.5. years ago but did have 2 bleeds within the 1st 2 years which were investigated by hysteroscopy and nothing found.

All was well until this March when I developed what my GP thought was an infection which she tried to treat with antibiotics to no effect. She sent me for a scan which I had this Thursday, both 'on the tummy' type and TVU (internal). The radiographer told me my endometrium was much thicker than normal and within 24 hours (which is what's worrying me) I've had a call from my GP to say they're arranging another hysteroscopy with biopsy fast-tracked within the next 2 weeks.

I'm so worried, and this is unusual for me. After the full BC 'experience' 6 years ago (mx, chemo, rads then Tamox) I had convinced myself that I was fine and my life was my own again. I know the NHS guidelines follow a 'belt and braces' approach and they assume the worst until they find nothing but this isn't helping me at all. I'm normally so calm and take everything in my stride but this has completely thrown me and I feel in shock. At work I lead a team of about 20 so have to keep the cool exterior and keep my feelings hidden, but deep down now i'm mentally planning how I'm going to hand over my work to the team if I need a possible hysterectomy.

Don't worry about replying; I just needed somewhere safe to post my feelings and get it off my chest (ha ha!). Bless you, BCC, for proving me with the facility to air my worries

xx

[trishap]

I wish I had an answer for you. . . I'm wondering the same thing. . . I have endometriosis (Stage IV), and wonder if the Tamoxifen will create more problems with my internal organs and I'll need to have a hysterectomy as well. - - - I'll be watching this thread to see if someone replies who has a helpful answer both for you and for me.  - - -Good luck!

[3network3]

Thanks Janet 

[Janet_BCC]

Hi 3network3

I'm sorry you haven't had any replies to your post yet.  I hope someone will notice it now and come along with a response.

I have attached a link to our publication on Letrozole which you may find helpful:

http://www2.breastcancercare.org.uk/sites/default/files/bcc64_letrozole_web_0.pdf

Take care

Very best wishes

Janet

BCC Moderator

[3network3]

I wonder if there is anybody else with the same issue.  I've been on Tamoxifen for two years exactly and do actually very well on it, except that I had a very very painful period in March (the second bleed post chemo since taking Tam), so the Gynie had a look and my lining of the womb is so badly affected by the Tam, that they recommend a hysterectomy and since I have a 7 cm cyst on my left ovary they want to take them out too.  The doctor at the breast clinic said they change me afterwards to Letrozole for another three years.  

3N3 xx