New procedure option

Alltru

Diagnosed  with ILC had a bilateral mastectomy with reconstruction. Can't take tamoxifen because of past DVT. I am premenopausal and being medically induced into menopause. After 4 months of shots and still having a menstrual cycle and high estrogen levels, went to talk to gynecologist to get ovaries removed. Thoughts are ended to help make a decision. 

Anonymous

I am a person who will do whatever it takes to keep me safest and healthy for years.  I wish I could tell you what to do, but I can only tell you what I'd do if I were in your position. I do know that ovaries are related somehow to protecting us from heart disease (maybe it's the uterus instead?) but I think others will know more than I about this subject. You are doing right to inform yourself before you make a decision that will affect you, though. Good luck.

mary625

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.

Alltru

Thank you for resonding.  Yes, my ILC was hormone receptor positive. I DO want to do everything to keep me cancer free, that is why I chose a bilateral mastectomy so I would not have to worry if the cancer is back in my other breast, but all the quick decisions that need to be made are starting to become overwhelming. Would you have considered doing a full hysterectomy or just oopherectomy? I was also told that being on AI there are so many side affects and the quality of life is not what it should be. Do you sometimes second guess yourself with the decisions you make for example, I will never regret my mastectomy but not having chemo or radiation sometimes scares me.  The oncotype was in the lower range of the grey area. Did I make the right decision not to proceed with chemo/radiation? My head has been spinning since being diagnosed in Oct 2013. I feel I have done well until now that is why I am reaching out for other opinions.

wallycat

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.

mary625

It was very hard just to find someone who was willing to do the oopherectomy and get that done.  The surgeon was not willing to do the hysterectomy, even though my grandmother died of uterine cancer at age 42!  So I went with my highest priority to get the two ovaries out.

I did not have any decisions to make in my treatment, for the most part.  That is one thing I will say that is difficult for so many women--to make the decisions--and although Stage III ILC was bad, there are really no decisions to make as one will be having all available treatment.  The only decision I had to make was whether to enter a chemo study called the iSPY study.  I was scared to death, completely overwhelmed, knew nothing about BC, etc., and all I wanted was the least possible chemo, so I did not pursue it.  I do at times wonder about that decision.

I have not had a great deal of SE's from the AI's.  Just the joint stiffness initially which was relieved with consistent exercise.  

momand2kids

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….

Alltru

I guess my thoughts are this...I was 45 when diagnosed with ILC in the left breast. 3 years prior to my diagnosis I had a biopsy of the same area and it was negative, I have had 2 other biopsies in the right breast which is a big reason that I chose bilateral mastectomy. My oncotype was 21, my tumor was 5 cm (which they did not know until they went in), I do not carry the BRCA gene. Only my mom's sister has had breast cancer. When I went for a second opinion, they sent me to a radiation doctor which was never discussed with the first oncologist. Everyone that I speak to who has had breast cancer has had either radiation or chemo or both. I definately trust my surgeon that he removed everything. I am trying to take all the right steps to stay cancer free. I have started running and strength training because these meds and menopause will do a number on the bones.

I have been followed by an endocrinologist for  7 years because of a nodule and last week at my appointment I was told it grew 25% in 8 months so another aspiration was needed. Thank god that turned out negative, but there is always the thought that a sample in the right place was not taken. Which is how I feel about my biopsy 3 years ago. My cancer was a low grade 2 so why was it so large?

I keep thinking why after 4 injections of lupron are my estrogen numbers so high? This concerns me considering my cancer is estrogen+.

I wish I could just as you said..."make a decision and don't look back"!!

 

 

 

 

 

2timer

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.

sgreenarch

Dear Alltru,

My situation was similar to yours. I was 49 at dx and pre menopausal. Tamoxifen caused my estrogen levels to shoot way up (not too common SE but reason to request hormone blood levels while on tamoxifen.) Did six months of Lupron shots but realized that I had no idea when they'd end. Real menopause could be one or six years away. Didn't love the thought of possibly being on lupron for that long. Also tho I am BRCA neg, I had two distant cousins who had died of ovarian cancer. Decided that the ovaries could go. Had oopherectomy and feel it was a good decision. Either way you are completely turning off ovaries. I preferred the surgical to the chemical approach. I eat well and try to exercise a lot. Feeling well. Feel free to pm me w questions if you'd like. Good luck.

JohnSmith

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

Also, how frequently are the levels tested?

rozem

please keep in mind that if you are not close to natural meno you could snap out of meno really quick. I had my levels tested to Sept, told i was firmly menopausal only to get my period 3 months later!  If i had switched to an AI i would have had zero protection

SOFT and TEXT studies out at the end of this yr will hopefully answer the ovary suppression question

Momine

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.

Momine

"I was also told that being on AI there are so many side affects and the quality of life is not what it should be."

Who told you that? I hope it was not a medical person. 

There can be unpleasant SEs both with tamox and the AIs. For some people it is really bad, as in can't tolerate it kind of bad, but I think that is a minority. For most of us, the SEs are joint pain, some hot flashes (although mine have calmed down a lot after 2 years on the stuff) and various other minor annoyances. It is important to keep in mind that the SEs tend to come and go, so it doesn't pay to get too excited by any given blip. The other thing to consider is that exercise can do a lot to counteract the SEs. In other words, you do have some degree of control over how much it will affect you. On days when it bugs me, I remind myself that you can't have any QOL unless you have the L.

mcgis

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?

JohnSmith

1. After Hormone Therapy begins, how are the hormone levels tested?
- simple blood test, etc?

2. How frequently are the tests?
- once a month, every six months?

3. Finally, did they test your hormone levels BEFORE starting treatment to get a baseline number?

Alltru

Wow!! this has been some journey. I am a true believer of things happen for a reason. I am so thankful that my oncologist went on vacation and I saw someone new!!!  You really need to be your own health care advocate.  If my new oncologist and I didn't question my menopause state, I would still be taking AI and lupron which after 6 months and severe bruising at the site I am still pre-menopausal.  What a waste of medication and possible side effects that would have been. Got my levels checked today and still nowhere near menopause.  Guess at this time I have no choice but to get my ovaries taken out!! Not looking forward to another procedure but what other choice do I have.

If anyone can let me know how the recovery went for them I would appreciate it.

Alltru

Hormone levels are tested through blood work: FSH, LH, and estradial.

I never had a baseline done and was never told they would monitor the levels.  The only reason we are now is that I have no signs of menopause.  If you are concerned about her levels then ask to get the levels checked.  I know for myself I need all estrogen out of my body!