New procedure option

I am assuming that your ILC was hormone receptor positive since most is.  It is extremely important to be on Tamoxifen or an AI if you have hormone receptor positive BC.  My thoughts would be to go through with the oopherectomy.  I did it even though chemo had put me into menopause because like Claire, I will do anything that I think will help me stay cancer-free.  I have noticed a difference in terms of getting some hot flashes that I did not have before the surgery.  I think my ovaries were putting out something.  The estrogen that is put out by the ovaries is protective against heart disease, but unfortunately, I think we as BC patients have to put the BC beast first above heart disease.  In any event, if they were trying with Lupron to shut them down, you wouldn't have had the protection.  Just my 2 cents.

Hi and sorry you are here.

yes, my head is still spinning sometimes and I am starting year 8.  I always wonder if I did enough, did too much, blah, blah.

Radiation is typically used when gals opt for lumpectomy or if clear margins are difficult to get with mastectomy...that's what i read but treatment seems to be a moving target these days.  There are more genetic tests offered and sub-cancer types that were not recognized even when I was first diagnosed....did they test those?  Do you want to know?  Would your medical team treat you differently if they had that information?

You did not state what your oncotypedx score was...how low/gray area was it?  Your medical team should be able to advise you on this and they should be the ones explaining your options.  They have seen more of this than any one of us has experienced individually.  

Also, how large was your tumor?  Though most people think ILC size is not factored in treatment, your medical team may or may not have an opinion on this.

I keep reading (and worry that I have misinterpreted the info) that mid-high onco scores do not indicate risk of recurrence...which may or may not be a fact, but the main reason is to see HOW RECEPTIVE the cancer is TO CHEMO.  The higher the score, the more beneficial the chemo would be.  Your whole pathology, your cancer size, any other genetic tests they did may make your team think chemo is overkill or it is a good idea.   I opted out of chemo with a score of 20.  My onco (2 of them) and breast surgeon (whom I adored and trusted) said that 4% or less of benefit would not be worth it because of the damage chemo can do.  Chemo is a wonderful arsenal, but it is not without risk.  One of my oncos actually said (he was British) that most gals that get chemo in europe are given it because docs assume it will kill the ovaries, thereby limiting the estrogen produced.  So....

we each make our own decisions and then live with what we decided and DO NOT LOOK BACK.  

There are gals that do everything and the cancer comes back; there are gals that do minimal to zero treatment and the cancer never comes back...and everything inbetween. 

Cancer is a crapshoot.  Many of us here fall outside the "bell shaped curve" that indicates who should or should not be here...

They just don't know enough.

Age, type of cancer, genetics, etc...all play a roll and even when we think we know, it doesn't play out the way it "should."

Find a medical team you trust; you pay them--make them earn their $$$$$ and help you navigate this.  

Best to you.

We are all rooting for each other to be here when we hear the news that there is a cure..may you be amongst them.

I also could not take the tamoxifen and I was pre menopausal--I took lupron for almost 3 years with an AI--just about to go off the AI after 5 years….

Cancer treatment (and cancer) suck.

I'm so sorry you're in this position and you have a very difficult decision to make.  I finished chemo in January and was told if my estrogen levels were pre/peri menopausal I would either be given lupron shots or have my ovaries removed.  I'd already decided to take the shots.  Fortunately, my estrogen levels were low enough that I didn't have to make that decision myself.

We all try to do everything we can to prevent this beast from killing us.  And sometimes it works and sometimes it would have been better to not have done anything at all.  Like everyone says it's a crapshoot, and doctors, researchers and people working to find a cure just don't know enough.  You have estrogen + cancer and the lupron isn't working ... you really need to get those estrogen levels down.  I believe that ovaries are what makes us women and I was strongly against having them take mine.  But if I were in your position I'd let them do it.  I know cancer has taken so much from you already and it hurts to it take even more, but you do have to give yourself the best chance.  I'd ask if there was anything else that could be done instead and if not, go ahead and have it done.

I am SO sorry.

After Hormone Therapy begins, how are the hormone levels tested?

Also, how frequently are the levels tested?

Alltru, I had my ovaries out for that reason. I did not want tamox, because we have a family history of endometrial cancer and ovarian cancer. 

The hysterectomy itself (we took the uterus as well, due to huge fibroids) was an easy surgery, with a quick recovery. Mine was done laparoscopically via robot.

The regaining of sexual function after losing all estrogen and all "moving parts" was a bit more challenging. Do not give up, however, it can be done.

Sorry you're all going through this, but glad I'm not the only one. I too am in talks about a full hx. I was put into chemo induced menopause only to get my period out of the blue 3 months after the year mark of not having had a period. I had already switched from tamox to an AI. I briefly considered the shot but wondered how long i was going to have to be on them and then thought well, i'll still have my lady parts and i'm feeling i don't want cancer to have a place to go. I chose a bmx too because i didn't want the chance of cancer going to the other side. I suppose i'm just trying to be proactive.  i'm very, very nervous though and keep re-thinking everything. 

Any word on how a hx effects your bladder...?

Momine, can you share your surgery experience. I'll have mine done laparoscopically via robot too.

Does a good lube help with sexual function?