Stage 1, low onctoype, cant take tamoxifen

Crescent5

WTH do I do? I have spent more time agonizing over deicisions, and I've reached the end of my rope here. I've had enough. I am 49, pre-menopausal. Got chubby about 10 years ago & lost weight, got very active 2 years ago. Felt in the best shape of my life until I got the mammogram call back.

LCIS & PLCIS found in late 2010. Leaned toward NSM, but took a year to interview different PS and to make sure this is what I wanted to do. Had MRI in Nov, and had a horrible wait for results as I felt this time there was something invasive. They found nothing.

Was scared to death of surgery, but wanted to move on from BC. Picked a date in January. I imagined the day I would no longer have to worry about BC. It was an amazing feeling.

One week afer surgery, got the call. 2 spots ILC were found in pathology. 4mm & 7mm. Had to go back in for ALND. Cried the entire time in pre-op. Woke up knowing I would be OK & there would be no node involvement. I was right however, the ALND caused aux & truncal cording. Ouch! A once very active woman, I could barely move my upper body. Thank Goodness for PT. I have gained 15 pounds of fat this year. Thanks BC & BC treatments.

Been bouncing around to find a good onc. Oncotype was 6 with distant recurrence rate on tomoxifen 5%. Genomic told me they don't know rate w/out tamox. Onc says rate is likely 9-10% (yet I keep hearing at my low rate, tamox does not cut recurrence in half, it's much less). I am 90% ER+ No LVI, clear margins.

Found out yesterday I have a rare clotting thing & cannot take tamox. Will meet with onc in a few weeks to discuss what else we can do, Blood thinners plus tamox, shots to put me into menopause & AIs? No No No, I can't take this indecision any more. Rush & wait for an appt. Go to an appt & hear crap you don't want/need. Argue for what you want. Wait to see another dr.

Onc said because of my exercise level, my rate is cut by 30%. I can't do math very well, but I figure that takes it down to 6-7%. Can I live with that? Or do I take a bunch more drugs and get that down to 3%? Is it worth it?

Is cancermath accurate? According to that, 4.9% of women like me will die in 15 years without hormonals. 3.3 of us will die with them. IS IT WORTH IT???

DIM?? I3C??? Please show me a reputable study that says they can help. Is there one?

I am so tired of frustration. I am tired of cancer. My kid tiptoes around me right now. This is no way to live. I want my life back. I want to stop agonizing over impossible decisons. Thank you for any advice.

MariannaLaFrance

Crescent-

I'm sorry to read your post. I can feel your frustration. Offering you HUGS and support from afar. I didn't have invasive cancer, so I cannot speak to LCIS or PLCIS, but I left my recurrance rate at 5% and walked away feeling fine about it. I didn't think the Tamox treatment for 5 years and bringing my rate down to 2.5% would bring me a lot of benefits.  Keep in mind I only had DCIS, so I am speakign from that perspective. My gut told me I was making a good decision.

As for the natural supplements, DIM I3C, those are good ways to drive estrogen levels down. I would consult with a nutritionist to see what good dosage would be for that-- and get your estrogen levels tested. I drove my estrogen levels down with extensive exercise (I'm in training for an Ironman right now).  

In the meantime, peace to you. I know the agony of making these decisions, and I hope you find some peaceful moments during this stressful time! 

Crescent5

Thank you Marianna. You know, I started my post on the hormonal board, then erased it & started it again on Stage 1. Then I decided this is where it needs to be. I think that tells me where I'm leaning.

Scariest decision I have ever had to make in my life. Much scarier than surgery.

Best of luck with Ironman!

Anonymous

Crescent, I saw the following somewhere on this site.  DIM is actually in phase II/III trial for TREATMENT of BC.  Just make sure if you get DIM that it does not contain soy.

http://clinicaltrials.gov/ct2/show/NCT01391689?cond="Breast+Cancer"&rank=47

NHsmiles

Hi Crescent--

Have you thought about having your ovaries removed?  THis will substantially cut the amount of Estrogen in your body.  I too cannot take Tamoxifen and I was offered to have my ovaries removed, however for me I feel the removal of my ovaries would not provide great benefit to me as I am only 10% ER+. BUT, I am tempted to do it due to the ovarian cancer risk associated with Breast Cancer. What prevents me from doing it is bone loss and heart issues.  I do not want to contribute to my existing heart issues from chemo.

I did try Tamoxifen and that is some interesting shit.  I developed Thrombophlebitis and had to stop after taking it 3 months. I found the memory issues detrimental to my quality of life and the depression overwhelming. 

My instincts are telling me just to get thru Herceptin which my last treatment is in June and be done with it.  I have had every rare complication from Chemo under the sun, and almost died from one of them.  I have spent more time recovering from complications than in treatment.

I was never interested in stats and percentages regarding my cancer as I do feel when it is my time there is nothing that will prevent my demise. I hate the pecentages and stats as it makes me feel even more like a lab rat!

I have been cancer free since 10/10...which was the day of my BMX.  I understand that some do not believe in being cancer free, however I believe in being very positive.

Heather 

Crescent5

Maud, thank you! Glad to see the NCI recognizing DIM. Now watch the price go up. lol Forgive my inability to read medical things with any degree of clarity, but isn't that test done in conjuction with tamoxifen?

Heather, good to see you again. I'm going for my exchange surgery wednesday and keep thinking of your "and I feel beautiful" moment after yours. I was actually feeling pretty excited. Until this.

BC sucks, but all the wrenches that get thrown at us througout the process suck too. It beats you down. I do believe at some point, you just have to say, "I have taken all that I can take. From now on, it's behind me."

I dont want to remove my ovaries. I have heart palpitations, and I don't want to go into instant menopause. I guess it's something I've considered, but I'm tired of having body parts removed in the name of what if? I tested BRCA - BTW,

I went for a serious walk this am and thought about how I would feel if I did not take AIs and got mets. I guess I would feel the same as if I did take AIs ... like sh*t. But I do feel like I need to do something. I just don't know what.

Thank you everyone, and good luck in June Heather!

NHsmiles

Hi Again....

Have you investigated other AL's? What side effects and such?

It drives me nuts how doctors have no problems suggesting what WE should do when they can never understand what it is to be in our shoes unless they get cancer themselves. They have the throw everything at it mindset, and some of us don't want to sacrifice our quality of life.

If I were in your shoes at 90% ER+ I would investigate every drug under the suns side effects since you have clotting issues. I personally will not take a different drug once I see that there is even a rare chance of clotting issues as I seem to the that rare percent. Unreal! I would even get a second opinion regarding the ER+ treatment.  Another doctor may have a better solution due to vast experience regarding clotting issues.

I am with you, tired of losing body parts with no guarantees. I wonder if removing 1 ovary would drastically reduce your estrogen production and bring you peace of mind. Actually I wonder how much Estrogen each ovary produces on average.....hmmmmm....Yep, I love human anatomy ...lol. The goal with you is reducing that estrogen level. I know the adrenal glands produce Estrogen and our lovely fat cells love to store it which is the reason for Al's after an Ooph.

Heather 

Anonymous

Crescent, dang, wrong one...sorry, the trial I saw used DIM instead of chemo, I'll try to find it

Heather, AMEN sister !!  you took the words right out of my mouth 

Crescent5

Thank you Heather. Removing 1 ovary is an interesting idea!

Maud, yes I would very much like to see the study of using DIM instead of I assume you meant tamox. I cannot find the one you're talking about. That's pretty huge.

Anonymous

Crescent, my brain is not working very well these days  I think it's this one, not sure

http://www.cancer.gov/clinicaltrials/search/view?cdrid=703752&version=HealthProfessional&protocolsearchid=9875826 

Crescent5

Thank you Maud. That one also has use of tamoxifen as part of the study.

I don't know what I'm going to do. =*(

Anonymous

"This phase II/III trial studies how well diindolylmethane (DIM) works and compares it to placebo in treating patients with breast cancer. DIM may slow the growth of tumor cells and be an effective treatment for breast cancer" 

Don't know Crescent, the way I read this is that the primary objectives mean to use DIM as a stand-alone. 

Criteria : to have been on Tam for 3 months with the expectation to continue use for > 18 months - to "Expand on currently available toxicity and safety of DIM-TAM combination" (maybe TAM's toxicity could be decreased....) 

But DIM will be used alone for an additional 18 more months : "ARM I: Patients receive diindolylmethane orally (PO) BID for approximately 36 months"

I can only speak for myself, but I figure if DIM is being studied at THAT level, it cannot hurt me and can only be beneficial.

Plus remember, Tamox is considered "chemo" as many stage IV rely on it to prevent progression

Hope that helps