Really scared and looking for hope- success stories

Adelozier

HI, I'm 37 and diagnosed with stage 2a er/pr positive breast cancer. No nodes were involved. My surgeon checked my intramammary nodes as well during mx. He checked under the breast bone as well. I was told with an oncotype of 13 that chemo is not indicated. I saw 3 seperate nci institution doctors. I have multifocal breast cancer . 7 tumors!!!! 4 larger ones ranging from 2.4 cm to 1.3 cm . They all say antihormonals are my best bet. However I am absolutely losing my shit on tamoxifen and can't imagine any others are you g to be any better. I'm so scared. I have a 3 year old son who thinks I hung the moon. I am allergic to just about every drug on the planet and almost died from ssris and benzos. I don't see any hope. I am looking for Long term survivors of stage 2a breast cancer ... it doesn't matter what treatment you had although no chemo would be amazing. Also, did anyone else find themselves in this situation? I can't stop sobbing. I can't even look at my child or husband. I'm in therapy... just looking for HOPE for future.. I thought losing my breast would be hard but it truly hasn't been. I know there are no guarantees in life and as a RN I see it daily .. but just looking for success stories... if I can't take these drugs .. these are not minor symptoms. Some are lige and death quit literally.

bluepearl

My girlfriend haf IDC stage 2a (and one positive node) and only had a lumpectomy....no radiation and no hormonal...she is 12 years out with no recurrences. If you look at Predict, online, you will find that the cancer stats are still favourable for early breast cancer without further treatment after surgery. It is just that they are better with adjuvant therapies. So it becomes a matter of luck I guess. How much risk you are willing to take. AND quality of life MATTERS. On the ketogenic diet, my moods were improved, I felt energetic after about a week, and it actually starves cancer cells from glucose because now you get your energy from ketosis, or burning fat, which cancer cells cannot do. But it is NOT a miracle cure or diet...just another tool.

memory

Hi, I'm eight years out from stage 2A breast cancer. I was twelve years older than you at diagnosis and my oncotype was 12. I had almost six years of adjutant hormonal therapy -- ugh. I understand what you're going through: tamoxifen was hell. Some women breeze through it, others don't: we're just two of the unlucky who don't. IF you were willing to have your ovaries removed you'd probably be a candidate for Arimidex. I found that MUCH easier than Tamoxifen. In fact, I told my onc that I'd be willing to take it indefinitely. However, she said the risk of osteoporosis would be too great under that scenario. Try and trust your doctors; continue to try and find an antidepressant that works for you: that'll help. Keep in mind: most of us end up dying from something else. So hang in there.

Icietla

Keep hope, Dear.

((Hugs))

Icietla

My OncotypeDX Recurrence Score was 13. My tumor size was "at least 2.1 cm." -- its size configured as grown could not be determined with certainty.

You have been going through a terrible time. A breast cancer diagnosis is always devastating. You have had a great deal of stress with waiting for appointments and testing procedures and having major surgery and having to wonder about results. By the time I learned of the Pathology results from my mastectomy surgery, the stress of those first weeks all made for sheer exhaustion for me.

Check on what antidepressant medicine/s work well with the respective anti-hormonal medicines. See whether, by eliminating what you know would be troublesome, there is a likely tolerable medicine regimen for you. Check about being transitioned to other anti-hormonal medicine.

All around you in your everyday life are many breast cancer survivors. You cross paths with them all the time.

We are here for you.

Adelozier

I almost died from ssris and benzos. It was determined through genetic testing that psych drugs are toxic to my system. I spent u days in cardiac icu fighting for my life from s small dose of ssri and benzo. I will never take that poison again! I certainly understand others view in wanting to take it though.

Icietla

Sorry, I have no background in Pharmacology, nor in Chemistry. Are there any possibilities among other medicine types (or classes)?

Have you had any genetic testing to determine whether you have any hereditable gene mutations associated with cancer/s? I think your having your indicated tumor burden at your young age, besides your young age at diagnosis, should qualify you for coverage for that type genetic testing. Depending on genetic testing results and other concerns and considerations, including but not limited to the trouble you are having with Tamoxifen, you may want to consider surgical removal of your reproductive organs. Ovarian Suppression is another means that could enable you to switch to an Aromatase Inhibitor.

oandtolivo

I was 34 with 3 small children when breast cancer came crashing into my life. I've been on tamoxifen for 6 years and it can be a nasty little pill. I was doing Zoladex ( for ovary suppression)but I stopped that last Oct. I just started to have periods again and my hormones are all over the place. I'm in good health, but I find I often need to talk out my feelings. The kids are patient with me but I do catch myself losing my cool for no reason. Do you have someone you can talk to face to face? A local support group or therapist. There is light at the end of this tunnel. I see the doctor once a year now and life keeps moving. I try to stay positive and enjoy life. Good luck and hang in there

Adelozier

have any of you not done chemo based on oncotype dx?

Meow13

I was 53 with 2 tumors, one idc and one ilc. I had mastectomy and I think they only sent in one tumor sample because I received a single oncodx number and report. It was 34, suggesting chemo but I didn't do chemo I did 4 years on AI drugs. So far, NED 6 years. I was 95% er+ and less than 1% pr so pr-.

Adelozier

my oncotype was 13 .. but I had focal lvi and multifocal stage 2... just scared a d confused. Dr put me on tamoxifen... but I feel like I should have done more ... really scared

Meow13

Try to take comfort in now they have you on the radar. You should be getting tumor marker blood checks and regular scans. Tamoxifen should help protect you. Since you are both er and pr positive tamoxifen is supposed to be just as effective as AI drugs. Make sure they are looking for uterine changes you certainly don't want uterine cancer, it is rare but can happen.

In your case chemo would not benefit you.

Ginj

Adelozier, being a few months behind you in the mill, I don't have a long-term success story, but I'm with you in terms of stage, grade and hormone receptivity, as well as the debilitating fear and sadness. I'm still awaiting Oncotype results, leaning heavily against chemo unless the MO (whom I've not yet met) presents a really good case. I just turned 59 four days before finding the lump so my go-to's will probably be AI's rather than Tamoxifen and am not looking forward to them (osteoarthritis already, 1 hip replaced four years ago and was starting the plan for shoulder replacement before this reared its ugly head). So, don't know if the hot flashes and joint pain SE's will be "So, what else is new?" or make life unbearable. So the happy ending hasn't arrived yet but I hear you!

Sabina1974

Hi Adelozier

I am stage 2a and unfortunately mine travelled to the two sentinel nodes. I know it's such a scary time but think of the millions of women who survive this disease. Yours did not travel which is great and with a low onco score your tumour was obviously lazy which is great. I am a 3 times cancer survivor and I am only 42. So take a deep breath think of all the women who survive and the majority do and if your mind starts travelling to dark places watch a funny movie and distract yourself.

Sabina

swg

I sympathize with you. Benzos upended my life--ruined my marriage; landed me in the hospital with a rare drug reaction.

Once you've been through something like that..it makes you extremely wary of ALL drugs. I, too, am very hesitant to do chemo, and I'll take Tamoxifen--but I'm not that thrilled about it.

There are a couple of threads about using natural means to suppress estrogen. At the very least, I'll do these in conjunction with Tamoxifen and read as much as I can about how to avoid side effects.

I also am starting a more aggressive diet and physical health regimen. I figure it can't hurt.

Let us know how you're doing.

gb2115

Hi Adelozier! I remember you from when you first posted! Sorry to hear you are struggling. I am also stage 2 (with lymph node spread) and didn't do chemo. Remember with the genomic testing (oncotype or mammaprint like I had) it indicates how much your tumor cells will respond to the chemo. For you and me, not so much, with your low oncotype and my low risk mammaprint. Their thinking is why throw these damaging chemicals at people if it's not going to help a whole lot. That is how my oncologist explained it.

So when you think that maybe you should have done more, maybe remember that to fight those thoughts back. I think it's good to be seeing a therapist.

What side effects are you having from the tamoxifen? Maybe there are solutions to help your quality of life?

edwards750

I didn’t do chemo because my Oncotype score was 11 thank goodness. I did have 33 radiation treatments. Piece of cake comparatively speaking.

Disne

Hopeful82014

Adelozier, I'm sorry you're here and struggling with adjuvant treatment. There aren't any easy answers but do keep trying and do keep bugging your MO for help.

I would advise you that the statement made above about scans and tumor markers ("You should be getting tumor marker blood checks and regular scans.") may not jibe with your oncologist's plans. For the most part, tumor markers and scans are NOT standard of care for "early stage" (that's us) breast cancer. Some MOs will run tumor markers but most insurers are reluctant (and becoming more so) to cover scans unless symptoms support said scan. Please don't feel that you're being under-treated if you don't get scans or tumor markers. OK?

If you stay on tamoxifen your OB/GYN should be keeping a close eye on your uterus. S/he may be able to help you navigate the ins and outs of tamoxifen if your MO doesn't seem to offer much help.

The first couple years after diagnosis are full of turmoil, fear and doubt. You might want to ask if your hospital or clinic has an oncology social worker (and/or support groups) who can help you. Most of these programs are free and can make a world of difference. Hang in there.