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KathyT 01-11-2015 04:51 PM

Hysterectomy for triple positive bc
 
Hi! I am curious as to how many of you triple positive ladies had a prophylactic hysterectomy. I have read that it is beneficial in young women. I am only 39 and want to do everything possible to reduce my risk of recurrence. I am seriously considering it. Thanks in advance for your input!

sassy 01-11-2015 06:41 PM

Re: Hysterectomy for triple positive bc
 
Hey Kathy,

I didn't have a hysterectomy, but did have my ovaries removed. You may want to consider that route. It is much less invasive, and every bit as effective for the purpose of hormonal cessation.

Several others have followed this same route and hopefully the will chime in.

Best of luck,

Becky 01-11-2015 08:11 PM

Re: Hysterectomy for triple positive bc
 
I had my ovaries and tubes removed. No need for the uterus to be removed to stop the estrogen.

It is asuper easy operation and recovery.

JessicaV 01-11-2015 08:34 PM

Re: Hysterectomy for triple positive bc
 
Hi Kathy,
If you are wanting to reduce your chances of recurrence of your cancer, and have estrogen-receptor-positive cancer, as you know you need to try to keep estrogens in the body down , because the richer it is in Estrogen, the faster and further your cancer is likely to grow/spread.

Estrogens, and the hormones that become estrogens in the body, are made in the ovaries, in the adrenal glands, and in fatty tissue. So if you are overweight, even if you remove your ovaries you will have quite a good source in the fat in your body unless you exercise and diet it away.

As Sassy says, removing your uterus will not reduce your risk, except incidentally because your ovaries are often removed at the same time.

The other part of the equation is cancer stem-cells. These are found inside tumors, and are shed by tumors, and float around in lymph fluid or blood, and can switch back and forth between the ancient primitive cell-form of breast cancer cells (Mesenchymal), and their natural cell form (Epithelial). If they are not dividing they will not be killed by chemo. They are able to find suitable spots in distant tissue like bone, lungs and liver and brain, and start growing into a new metastatic tumor.

As yet there is not much treatment that effectively hits these cells except if/when they are dividing. Immunotherapies are exploring some possible treatments using this approach. So that risk ie of cancer stem cells causing metastases, is one we currently have to live with, although there is some evidence that some foods including brassica and red cabbage, green tea, tumeric, and soy, and maybe others, do hit several of the pathways by which cancer cells change and grow. Eating these foods is recommended. It is not clear if concentrates of the active ingredients are effective and or/safe, but if you want to take concentrates, check with your oncologist first.
I understand that if your tumor is has receptors to both HER2+ and Estrogen, if there is estrogen around it helps it grow and spread a lot faster. Estrogen is what Tamoxifen and Aromase Inhibitors etc help to block in different ways. Reducing body fat, reducing alcohol intake, exercising more, keeping dietary fat reasonably low, are all meant to help reduce estrogen and prevent relapse.
best wishes
Jessica

LeahM 01-12-2015 06:27 AM

Re: Hysterectomy for triple positive bc
 
Hi Kathy
A week ago today I had my uterus, fallopian tubes and cevix removed. Ovaries remained even tho my ER+ was 5%. It was a hard decision to make and very personal but I will share.

I was told back in the beginning that my ER+ status was so low that (maybe) 10 years ago it would have been considered negative, that I wouldn't even be on tamoxifen. Times have changed so now I am considered positive.

After a years worth of conversations between me and my onc, me and my gyn and my gyn and onc it was decided to keep my ovaries but get rid of the rest. And here is why:

Recent stud.ies show that removing your ovaries at a young age (I amm now 42) could increase your risk of heart disease, and death from heart disease by 40%. Heart disease is the #1 killer of women. Removing my ovaries would not stop my body from producing estrogen and I would remain on Tamox or switch to an AI.

Further studies are showing that ovarian cancer actually begins in your fallopian tubes. My gyn now recommends to women who want their tubes tied to have them removed instead.

My uterus had to go (in my mind) as I have a family history of uterine cancer and while slim there is a chance that tamox can increase your risk of uterine cancer.

And yes, all these studies were shared with me by my gyn.

So I keep my ovaries and will someday naturally enter menopause. Meanwhile I will no longer get my period which is a huge relief as they have been crazy and horrible since they came back after chemo. Which was another reason why I wanted to have this surgery, to stop my periods.

All that being said let me say this too. I know in my heart if my ER% had been higher I would have had my ovaries removed too. I hope I don't ever regret my choice to keep them.

Plus, fear. Fear had a lot to do with this decision. My fear of uterine cancer far outweighed my fear that my ER status would cause a cancer metastasis. The women in my family that had breast cancer were all "cured" for the remainder of their lives but then had a separate cancer in their uterus.

I wonder if there is some genetic BRCA that causes this that we haven't found yet?

Best
Leah

KathyT 01-12-2015 08:58 AM

Re: Hysterectomy for triple positive bc
 
Wow ladies thanks you so much for all of your feedback, I truly appreciate it. You are all so knowledgable!! In terms of hysterectomy versus oopherectomy, I do have fibroids and my uterus does sit posterior so I do get back pain from it. Plus my periods are so bad, I basically hemorrhage for 2 days. I know it's a bigger surgery but to not have periods again would be wonderful! I see my gynecologist in May and will discuss with her what she thinks would be the best thing to do. I basically have no risk factors for breast cancer, except my diet was not the best(high in sugar and did not eat my fruits and veggies as much as I should), my BMI is 20, I had my kids younger, breastfed all of them, don't smoke, no Cancer at all in my family, I exercise. I have since changed my diet, buy organic and increased fruit and veggie intake, decrease red meat intake, also take vitamins, Baby Aspirin, had my Vitamin D level drawn and was low so now take Vitamin D too. Changed my deodorant as soon as I was diagnosed. I did drink alcohol on a regular basis so now I do not drink during the week at all and if I feel like a glass of wine or two on the weekend I have it. Anyway, thank you so much for your feedback!
Best wishes....

JessicaV 01-12-2015 07:45 PM

Re: Hysterectomy for triple positive bc
 
Hi, having a hysterectomy because in addition to breast cancer you are having problems with periods and uterus all makes perfect sense. Sorry if I came across a bit patronising. One thing you may also want to look at is that acupuncture by a properly trained practitioner can work wonders on female hormones. I used to go to a local GP in NZ who spent 5yrs in China learning acupuncture, and then came back to teach physios etc. She got her old gynae friends to send her potential hysterectomy patients who had heavy bleeding but would prefer to avoid hysterectomy. She cured their heavy bleeding so no op was needed. The gynaecologists stopped sending these patients to her as they were doing themselves out of a lot of money. She got my period flowing well after a very sluggish start on one visit.

KathyT 01-12-2015 08:19 PM

Re: Hysterectomy for triple positive bc
 
Jessica
I did not find you patronizing at all!! I appreciate all that you shared! I have never done acupuncture but maybe I will look in to it��
Thanks
Kathy

tricia keegan 01-13-2015 04:00 PM

Re: Hysterectomy for triple positive bc
 
I was highly triple pos so had my ovaries removed in '06 as a preventative measure and to take Arimidex and have no regrets.

europa 01-13-2015 07:41 PM

Re: Hysterectomy for triple positive bc
 
I am starting the process to get a hysterectomy too. My uterus is constantly thick because of tamoxifen and I now can no longer wear some of my jeans because it's so swollen. So it's coming out, along with the Fallopian tubes. I too am keeping my ovaries because I'm nervous about heart disease. But I will be chemically shutting them down to see if I do okay. I will be seeing a cardiologist to monitor my heart, if there's an issue, I would stop the injections. If there is no problem, at 45 I will have them permanently removed and will switch to arimidex.


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