Should I have my ovaries out??

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Pixiepixie
Pixiepixie Member Posts: 19
edited February 2015 in Stage III Breast Cancer

Hi all

I was diagnosed with BC in Sept 14. It's been a really huge struggle as I was 20 weeks pregnant at the time. After having a miscarriage earlier in the year we were overjoyed at falling pregnant again. Then we were hit with the devastating diagnosis. I had a mastectomy and fully node clearance at 22wks pregnant. 7/8 nodes had cancer and I was ER/PR+ (terrifying as I was surging these hormones whilst pregnant). I then had FEC chemo in my last trimester and finally had a healthy baby boy by elective cesarean 12 weeks ago. I now have 8 weekly taxols (out of 12) to go and then radiotherapy + tamoxifen.

I have one goal in life now and that is to see my son grow up. I was lucky to get clear scans and want to do everything in my power to keep it that way. I'm so scared of the extensive node involvement and am therefore in discussions with my oncologist about having my ovaries removed since I'm ER 7 & PR 9.

I would love to know what you ladies think and if anyone has had this done..or considering it? We don't plan to have anymore children and I'm also prepared for the instant menopause symptoms (if it means it lowers my risk of a reoccurrence). My oncologist doesn't seem overly keen and doesn't like discussing reoccurrences and secondaries so I got a second opinion from a private consultant. She seems to support my decision and said an oophorectomy plus aromatase inhibitors is definitely an option.

Sorry for the long post...!!

In addition I've also changed my diet loads. I'm following a plant based diet with only grass fed chicken once a week. I juice organic fruit and veg each morning. I eat turmeric daily (my Onc said it makes Taxol more effective) and I've cut out dairy. I'm trying to stay active and fit while on chemo (for example I walked 2 miles today with the pushchair!).

Is there anything else I could be doing to help myself? Any thoughts on the ovary removal would be much appreciated!!

Thanks so much.

Seema xx

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  • Lolis197138
    Lolis197138 Member Posts: 512
    edited February 2015

    Hi,

    Sorry to hear about your struggles while pregnant but very happy that your baby boy is healthy and well.

    Have you talked to your MO about the monthly injections to supress your ovaries and take AI instead of taking the ovaries out? The SOFT TEXT results show a benefit to young women to be on AI and ovary suppressants. At least the monthly injections are not permanent and you can think about the surgery later on. 

    I like you was thinking about it after my surgery and my MO said that we could discuss it later. I went through FEC-D and now I have been in menopause for the past 7 months. 

    For now focus on finishing your treatments. In terms of changes you are doing great. Keep the stress level in check is important. 



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  • Pixiepixie
    Pixiepixie Member Posts: 19
    edited February 2015

    Hi Lolis

    Thanks for replying. No I hadn't heard of the SOFT TEXT but I've just googled it and it's a brilliant study. The results look great..."At five years from study entry, 92.8 percent of women remained free from breast cancer after treatment with exemestane plus ovarian function suppression". I wonder if they then switch you onto another drug after the 5 years??

    I'm seeing my Onc today and will mention it.

    So I guess I could consider the injections first and once I've fully recovered have a think about the surgery option.

    I see that you are the same age as me. How are you coping? Have your treatments ended now?

    x

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  • Lolis197138
    Lolis197138 Member Posts: 512
    edited February 2015

    It's good idea to talk to your oncologist about it. And take the decision about the surgery later on. 

    I am 4 months out of radiation. It's been okay so far. Found myself to be stronger during treatments and after that I felt like I wasn't doing anything for it. You probably won't feel it much as your baby will keep you busy. 

    Menopause and not going to be able to be pregnant has made more damage than chemo. At least I am alive and "healthy". 

    Come to these boards and post often. It helps!! 

    If you have any questions about the chemo pm me.


    Hugs!!!

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  • lauren32
    lauren32 Member Posts: 46
    edited February 2015

    Hi ladies

    first time I'm posting although I have been lurking on these boards for a while. Our situations sound very similar. Seema congrats on the birth of your son but sorry that this other nonsense was there too but what a great distraction in a good way on the one hand and in a tough way on the other having to deal with h chemo etc while looking after a tiny baby. I found a nice blog called murray madhouse about a lovely girl Erin who was also preg when she found out she had bc and she's doing very well.

    I was diagnosed in sep last year at 32 I had a small tumor 1,2cm er and pr positive. Her2 neg. I think they were quite surprised that I had 6/18 positive nodes :-( . I had a single right masectomy and full node clearance. Have also had CEF Chemo and now have seven more weekly taxols to go. Then radiation.

    I have found hope in the soft text studies and my onc is keen for me to have a full hysterectomy with oopharectomy with an AI. She did say that for the first few months I will have the injections to suppress the ovaries to get me used to menopause first. I am anxious about the side effects but with the worries we have that's a small one. .

    I have two young children who are turning 3 and 6 soon. Lollis I'm wondering if I'll also be feeling like that after treatments im sure I'm going to be looking at the little tablet willing it to please work perfectly!! Ironic that a few months ago I was taking the pill every morning adding more in! Are u both from canada ? I'm from South Africa.

    I've also been juicing although I can't always get organic and eating lots of veg and fish. That's interesting about the turmeric how do u eat it and how much?

    We have to keep the faith although my mind has been my biggest battle!!

    Thanks Lauren

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  • new_direction
    new_direction Member Posts: 449
    edited February 2015


    what are the pros and cons for

    - ovarian suppression

    - oophorectomy

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  • cordelia
    cordelia Member Posts: 23
    edited February 2015

    My onc suggested having the zoladex injections for a few months to see how I did with menopause. The injections were kind of painful, but we have all been thru worse. After 6 months of the injections, I was really tired of going back to the doctor monthly. I had my ovaries out in November. Everyone is different, but, for me, it was easier than a trip to the dentist. Surgeon went in thru the navel to remove both ovaries and tubes. No scar. No need for pain meds after the first day. Home in bed 5 hours after surgery. So glad I did it. We all have such different things going on with our hormones, though. So the injections are worth a try to see how it goes. You can always stop the injections, but you can't put your ovaries back in. Hugs to you.

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  • Pixiepixie
    Pixiepixie Member Posts: 19
    edited February 2015

    Lolis - I absolutely agree when you say at least you are alive and healthy! I look back to life before my diagnosis and can't believe the kind of things I used to worry over. I remember one time being on the phone to a lady from Apple as my login wouldn't work...I got so frustrated on the phone I ended up crying!!! Lol Her response was "what are you going to do when there is a real problem dear"!!!

    Lauren - hi there, like you I've mainly been lurking on these discussion boards and I must say it helps reading about everyone's experiences and knowing I'm not the only one going through this. Thanks for suggesting murray madhouse's blog. I've just had a read...wow we share such s similar story!! I've dropped her a quick email to say hi all the way from UK. So many ladies on here are from America. So you are in SA? I love the SA accent so much :)) We got diagnosed at the same time and seems are treatment is also very similar. It's promising that your Onc has also suggested this approach?? I still can't get my head around the stats...

    "At five years from study entry, 92.8 percent of women remained free from breast cancer after treatment with exemestane plus ovarian function suppression".

    Am I reading this correct? I know it's only for 5 years but that seems like a lifetime when you have gone several months thinking it's all over!!

    So I eat an inch of fresh turmeric (peeled) with a pinch of black pepper to allow the body to absorb it. I'm also taking a shot of raw garlic each night. It's meant to help kill any stray Cancer cells... So yes this is now my new nightly medication!!! Have you made any dietary changes? I do miss cheese but have recently ordered some vegan cheese by Violife... I hope it's nice!!

    New direction - I'm not too sure on the pro's & cons apart from the injections being a gentle way to get started before committing fully to having the ovaries out. It does sound painful though :( I'm hoping somebody will respond with a more comprehensive list of pro's and con's!

    Cordilia - thanks for sharing your experience. That gives a great insight into what i can expect if I went through with it. My pain threshold has definitely gone up after all this so I think I could cope with the injections (I think??) but I also know I would get really fed up with it being a monthly thing! The fact they can go through your naval if you had surgery and leave you scar free is amazing!

    Thanks so much for your responses so far ladies xx

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  • Lolis197138
    Lolis197138 Member Posts: 512
    edited February 2015

    Pixie, you are right, the most important difference between the two is that oophorectomy is permanent and one time deal whereas the suppressant is temporary.

    Here something that I found on Living beyond breast cancer.

    "

    Ovarian Suppression: LHRH agonists

    The amount of estrogen your body makes can be reduced by using medicines that shut down the ovaries for a time. These medicines are calledluteinizing hormone-releasing agonists(LHRH agonists). LHRH agonists are believed to protect the ovaries of premenopausal women during chemotherapy, but the full benefit is still unknown. LHRH agonists are still under study. The LHRH agonists are:

    • Goserelin (Zoladex)
    • Leuprolide (Lupron)
    • Triptorelin (Trelstar)

    Ask your doctors to be specific about what kind of ovarian suppression they recommend; some doctors may use “ovarian suppression” or “ovarian ablation” to mean the same thing. Ovarian ablation can also mean surgery to permanently remove your ovaries.

    How they’re given

    LHRH agonists are given as an injection once a month, every three months, or as an implant that lasts three months.

    Possible side effects

    Hot flashes, mood changes, vaginal dryness, loss of sexual interest, weight gain, headache, bone thinning, bone pain, insomnia, sweating, fatigue, joint and muscle aches.

    Ovarian Ablation: Oophorectomy

    Oophorectomy is surgery to permanently remove your ovaries. It causes surgical menopause and ends fertility. If you have an oophorectomy, you will no longer be able to become pregnant. Oophorectomy may be done in women of any menopausal status, but it is most often recommended if you are premenopausal.

    Oophorectomy is often used in women who are at high risk for developing breast cancer because of BRCA1 or BRCA2 genetic mutations.

    How it’s given

    Oophorectomy is a one-time surgery. Your doctor may also recommend treatment with tamoxifen or an aromatase inhibitor.

    Possible side effects

    Permanent infertility, hot flashes, night sweats, mood changes, vaginal dryness, bone thinning, loss of sexual interest."

    http://www.lbbc.org/Understanding-Breast-Cancer/Breast-Cancer-Basics/Treatments/Hormonal-Therapy#LHRH

    Hope this helps.

    Hugs

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  • formydaughter
    formydaughter Member Posts: 213
    edited February 2015

    hi ladies. Per the SOFT results, I decided to switch from tamoxifen to Lupron with an AI. I started the Lupron 2 mos ago. I first had a one month shot. Not too bad. Then I had a three month shot. Holy hot flashes! I started Femara 3 days ago.

    Last week I asked my MO and OB and a GP about the difference in SEs from Lupron vs. Ooph surgery. Apart from surgery being permanent, they each independently said there are no differences in hot flashes, etc. They explained that the way that you got to the result of putting your body artificially into menopause did not impact the result of doing so to your body. (Noting that natural menopause is more gradual so easier to handle usually.)

    The injection approach makes sense for me right now because I'm not yet sure how well I'll handle Femara. I chose Femara over exemestane (used in SOFT) because the later is a steriodoil drug and my body balloons up from steroid based drugs (30 lb gain during chemo despite not eating much of anything). Though it's only been a few days, my tamoxifen head ache's are subsiding but I'm feeling severe hand pain all of a sudden. AIs are known for joint, bone and muscle pain.

    The other point my MO made was that the survival curves between the 3 arms of the SOFT trial are all pretty high. In women younger than 35, there is a bigger difference. But for me (age 40 at DX), he thought that tamoxifen was also a good choice.

    To answer the question of what happens after 5 yrs of an AI - the current answer is nothing, but that may change. Recent trial results showed that 10 yrs instead of 5 on tamoxifen was beneficial. So that standard of care just changed. For AIs, it still is 5 because they do not have trial results in showing 10 is better. With AIs, you bump up against osteoporosis. This limits your time on it. Not true for tamoxifen, which actually builds bone density. So, this may mean a difference in the 10 yr rx. But it also could depend on the individual and how you react to the drug. (I note also that Ovary suppression sucks bone density, so we are getting a double whammy.) Possibly after 5 yrs of an AI, they will say to take 5 yrs. of tamoxifen.


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  • lauren32
    lauren32 Member Posts: 46
    edited February 2015

    Cordelia Thanks for sharing your story about your op its a relief to hear it did not go so badly for you. Thanks Seema I must try find fresh turmeric I don't think I've ever seen it here. If you go to living beyond breast cancer website there's a download of a webinar on ovarian suppression plus an ai. It's very informative and the results look promising!

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  • lauren32
    lauren32 Member Posts: 46
    edited February 2015

    formydaughter Thank you for all that info!! Interesting you mention it because yes my oncologist has alluded to going onto tamoxifen for five years after the five years of AI. Thanks too for that info on the exemestane vs femara

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