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Topic: preventive benefit of hyst/ooph in ILC?

Forum: ILC (Invasive Lobular Carcinoma) — Just diagnosed, in treatment, or finished treatment for ILC.

Posted on: Mar 28, 2008 06:51AM

paige-allyson wrote:

Speaking yesterday with another ILC friend the question came up re: where there could be a benefit of ooph/hysterectomy over ovarian suppression (Lupron in my case). The idea we discussed was that since ILC mets seem to like the reproductive organs perhaps giving them one less place to go could be a good idea and would kill two birds with one stone re: eliminating the need for the suppression. Anyone have any thoughts or knowledge re: this? My onc at Dana Farber said he wasn't thinking about ooph down the road, but we did not get into the larger topic, we were just discussing the ovarian suppression side of things.

I can't believe the willingness I've developed to part with body parts since the bc dx Undecided

Dx 5/18/2007, ILC, 3cm, Stage IIIA, Grade 2, 6/17 nodes, ER+/PR+, HER2-
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Mar 28, 2008 08:22AM wallycat wrote:

I soooo hear you!  I too am willing to part with anything non-life-supporting Frown .

Most women produce estrogen in their ovaries AND other fatty parts of their bodies, so even if you remove your ovaries, you still will require a hormonal to suppress/blunt other production.

Next time I have to go under for anything, I may suggest the ovaries, but I am so glad not to have more surgery, that right now, for me, I'm on tamoxifen and hopeful that is enough.

Dx 4/07 1 month before turning 50; ILC 1.8cm, ER+/PR+, HER2 neg., Stage 1, Grade 2, 0/5 nodes. Onco score 20, Bilateral Mast., tamoxifen 3-1/2 years, arimidex-completed 4/20/2012
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Mar 28, 2008 08:42AM paige-allyson wrote:

I'm on Femara already, with the Lupron as "insurance" since I was on the fence in terms of menopause prior to chemo- tested post-menopausal x 2 based on estradiol levels but was still having regular periods. I hear you re: the glad not to be having more surgery- I have medical treatment burnout so I don't necessarily want that ooph today but do wonder if there is a benefit. Just got back from a fat burning run- take that estrogen!

Dx 5/18/2007, ILC, 3cm, Stage IIIA, Grade 2, 6/17 nodes, ER+/PR+, HER2-
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Mar 28, 2008 11:03AM SLH wrote:

Hi Allyson,

Three years ago, after I had a bilateral for stage 1, grade 1 ILC, my onc STRONGLY recommended that I have a hysterectomy.  I was 51, but hadn't started menopause.  I haven't been tested for the BRCA gene, but my mom has ovarian c right now.  The onc/surgeon said that I needed to have a complete hyster, taking the whole package, because having bc, esp estrogen+, makes you at greater risk for ovarian, uterine and endometrial cancers.

Watching my mom with ovarian c these past 6 years made me quite willing to part with my innards.  And compared to the bilateral surgery, the hyster was a walk in the park!

sally 

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Mar 28, 2008 11:08AM petelzmom wrote:

Hi,

I chose to have a complete/total hysterectomy. I'm on tamoxifen and that targets the uterus, ovaries produce estrogen, cervical cancer is sneaky. The list went on for me. It was a little easier for me because chemo put me into menopause and I am done having children. I think my main goal was to eliminate as many targets as I could. The recovery hasn't been bad at. I wanted to go back to work after 3 weeks but my doc wouldn't sign me off. I had laproscopic so it was minimally invasive. It's a personal decision, but being Stage III on one side made me pull out all the guns available.Laughing 

Dx 11/5/2006, ILC, 6cm+, Stage IIIC, Grade 3, 3/15 nodes, ER+/PR+, HER2-
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Mar 28, 2008 11:13AM petelzmom wrote:

Sally,

 I also had bilateral mascetomy in April 07. I had Stage I IDC on one side, and Stage III ILC on the other side. The hyst. surgery was a breeze compared to other surgery! The hardest thing was to not do too much, had to pace myself.

Both my GYN and my ONC were very supportive of my decision.

Dx 11/5/2006, ILC, 6cm+, Stage IIIC, Grade 3, 3/15 nodes, ER+/PR+, HER2-
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Mar 28, 2008 01:14PM karen1956 wrote:

My onc recommended an ooph for me at the time of initial Dx.  There is an association between BC and ovarian cancer but not uteran cancer.  My insurance did not want to pay for a total hysterectomy.  I freaked out and called my onc stressed to the max (this was 2 weeks before schedued surgery) and he confirmed the above.  I consulted with a 2nd gyn and he said the same thing and this is the doctor who did my ooph.  At times I wish I had everything taken out, but then again, I am okay with it. Karen

Karen in Denver, Dx 02/03/2006, ILC, stage IIIa, ER/PR+, HER2-,
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Apr 14, 2008 09:59AM gandl wrote:

I'm scheduled for a TAH/BSO on June 6. I will have the exchange of expanders to implants at the same time. Two birds with one stone so to speak. I just found out that I am menopausal and my unusual bleeding was due to complex endometrial hyperplasia with atypia.  The gyn says that it will turn into cancer and I must have the surgery.  I'm worried about the fibroids just being found at the same time because menopause should make them smaller.  Anyway, it's not ILC apparently, so I can be rid of a target without having had the ILC spread. I was really hoping it was just fibroids.

gandl multicentric 6 ILC tumors, extensive LCIS, isolated tumor cells in 1 of 6 nodes, bilat mx 2-13-08, arimidex & actonel 2-21-09, switched to aromasin 8-20-09 Dx 1/28/2008, LCIS/ILC, Right, <1cm, Stage IA, 1/6 nodes, ER+/PR+, HER2- Hormonal Therapy Arimidex (anastrozole), Aromasin (exemestane)
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Apr 14, 2008 10:00AM - edited Apr 14, 2008 10:00AM by gandl

This Post was deleted by gandl.
gandl multicentric 6 ILC tumors, extensive LCIS, isolated tumor cells in 1 of 6 nodes, bilat mx 2-13-08, arimidex & actonel 2-21-09, switched to aromasin 8-20-09 Dx 1/28/2008, LCIS/ILC, Right, <1cm, Stage IA, 1/6 nodes, ER+/PR+, HER2- Hormonal Therapy Arimidex (anastrozole), Aromasin (exemestane)
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Apr 14, 2008 12:07PM - edited Apr 14, 2008 12:23PM by TenderIsOurMight




One not so theoretical and pragmatic support of such surgery in an ILC breast cancer patient (due to the known tendency in advance disease for ILC to involve reproductive organs) might be any as yet unidentified special interaction between a random blood or lymph borne metastatic ICL cell and ovaries and uterus.

Why is it that ILC has propensity for reproductive organ metastasis? Is it fertile ground for an ILC cell implantation and growth due to ovarian cell stromal (background) and joint hormonal receptors, or possibly due to "honing" signals from ovaries preferentially fostering migration?

No one knows as yet of course. With time, the answers to these questions may help identify drugs to block the distant organ metastatic process for women with breast cancer. Insightful progress is being made in the science of metastases.

But for now, selective end organ removal such as you are asking seem a reasonable informed consent-directed step for those interested.

All the best,
Tender

It cannot be emphasized too strongly that treatment of each patient is a highly individualized matter. (FDA-approved labeling for warfarin (Coumadin) NDA 9-218/5-105)
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Jun 7, 2008 08:54PM moonie wrote:

I had an ooph done lapro.  It was a very easy surgery for me.  I had it done since my dx was very early bc and chemo wasnt recommended.  Some studies have shown that for very early bc, oophs had similar results to chemo.  For me, it was an extra insurance policy since I was 47 w/ no signs of menopause.  I wanted to reduce the nasty estrogen.  Also, it allowed me to take an AI (Femara for me), which has shown lower recurrence rates.

Dxd 12/03, DCIS, Mast, ILC, ooph, unilateral pedicle tram 2004
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Jun 8, 2008 07:21PM Gitane wrote:

I've wondered if removing reproductive organs would be wise. It seems logical that giving it one or two less places to establish itself couldn't hurt. My onc discouraged this telling me it would go everywhere if I get mets and this surgery wouldn't prevent that. Just the same, I see on these boards that not everyone is hearing this same message. Is it because some of us have family history? It seems that blocking bone mets might help prevent other mets, why not blocking reproductive organ mets? Anyway, if we want it, would insurance pay for it? It sounds like in one case above, they would only pay for removal of ovaries.

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Jun 8, 2008 09:48PM moonie wrote:

Gitane -

Just to clarify....it was my decision to only remove my ovaries (and actually they tubes came "along").  I was asked if I wanted my uterus removed also, but I declined.  My thinking was that I had had about enough parts removed and I felt like keeping my uterus since the main source of estrogen was my ovaries.

I have basically no family history.

You can check with your insurance company, but odds are pretty good that once you have been dxd with bc, they will pay for ooph or hyst.  (It is actually one of the oldest treatments for bc that tends to go in and out of favor...and oncs vary in their opinions on it.)

Dxd 12/03, DCIS, Mast, ILC, ooph, unilateral pedicle tram 2004

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