tamoxifen with frequent menses, recomending hysterectomy.

[sddinkinsmom]

I am a 37 yr. old. I was DX with HER 2+ 1 yr. ago in Jan. 2014. After neo-adjuvent chemo and bilat mastectomy, 5 weeks of radiation and 1 yr. of Herceptin....also tamoxifen for the past 7 months. I am having frequent menses....every 2 wk.s to 4 weeks. OBGYN did U/S with biopsy(which is not back yet.) Still she would like to do a total hysterectomy and oncologist agrees. U/S shows still ovualting and frequently. Advice on a oophorectomy vs total hysterectomy would be great? Also wondering if anyone else has had this go on while on tamoxifen? Oncologist would take me off of tamoxifen and try a aromatase inhibitor if oophorectomy. Feeling a bit overwhelmed with the side effects listed with a total hysterectomy. Any input would be appreciated?
Jan. 15th 2014Dx with Her 2 + ER+ PR+ entire right breast tumor..10cm in craniocaudal dimension.
Grade 3.
Right axillary lymph node 2.3 cm. and biopsied positive for HER 2. Multiple enlarged right lymph nodes. Enlarged lymph node in pectoralis muscle.
Jan. 2014 PET scan done, no other organ involvement.
29 Jan. 2014 Port placed, 1st round of neo-adjuvent chemo started. Perjeta, Herceptin and taxotere.
April 2014 Admitted to hospital for pneumonia/sepsis.
13 June 2014 bilat. mastectomy.
18 July 2014 start 5 weeks radiation.
18 Aug. 2014 start tamoxifen.
Oct. 2014 Frequent periods, every 2 weeks. Uterine U/S and biopsy. Biopsy negative.
Dec. 2014 dx with lymphedema.
Dec. 2014 right arm infection to lymph system.
23 Jan. 2015 Last dose of Herceptin.
6 Feb. 2015 last reconstruction surgery.
March 2015 lymphedema with a right hand cellulitis.
March 2015 still having frequent periods every 2-4 weeks. Another uterine U/S and biopsy. OBGYN and Oncologist recomend ovaries removed. OBGYN would like to do a total hysterectomy.

[Jackie07]

Hi,

You've been through a lot the past 15 months. The suggestion of another surgery must be overwhelming.

I underwent total hysterectomy 5 years ago after another family member had been treated for a Lynch Syndrome - related cancer. Everything has been fine so far. The decision was based on personal/family cancer history and the BRCA gene test result - I was at pretty high risk of getting other cancers of the reproductive organs.

I used to drink a lot of milk. Now I have just a cup of milk for the oatmeal in the morning. There are walnuts, raisins, bananas, oranges, strawberries, blue berries, and almost a cup of yogurt in the huge bowl. I don't really walk much except around the house, but I would tap my feet while sitting in front of the computer (supposed to help build up bones.)

O and the flax seeds.

I am guessing your Estrogen Receptor number is pretty high, so it's important to block the estrogen in your body. That can only be achieved by switching to an A.I. as Tamoxifen only blocks the estrogen in the breast.

I had experienced a lot of UTI's and was eventually prescribed an antibiotic capsule (Nitrofurentine) to be taken right after being intimate. That (plus KY Jelly) has helped quite a bit. You and your husband will need to communicate well on this part.

Hope this helps.

[sddinkinsmom]

Jackie,
Thank you so much for your response. It does help. The side effects seem a bit overwhelming, but with 4 little girls running around....I am trying to do what is best to be here for them as long as I can. Again thank you so much. I do try and eat healthy and the little ones keep me active. I take fish oil and should add the flax seed (helps with heart correct?)

[Becky]

One place to go to ask more questions on total hysterectomy at your age is another onlinebgroup called hyster sisters. They have lots of good advice. I went there when I did just an oophorectomy as I was premenopausal then. I wanted to know the side effects etc. I was like you, getting my period often and it was very heavy too. I also had a biopsy and it was fine. I did not do the total hysterectomy. Decided to do just ovaries and tubes. Easier recovery and it does the job of putting you in menopause. I went on Arimidex a few weeks afterwards. Hyster sisters will have lots of women doing it forbthe same reason as you as well as those doing it to prevent ovarian cancer because they are BRCA positive. And then there ar e those with other medical situations like fibroids etc. Can you just get the ovaries and tubes out as your biopsy will probably be fine? Just wondering. It will be easier on you and the ai's don't affect the uterus like tamoxifen can.