​Stage 1, Grade 1, ER/PR +, thinking of refusing AIs

THanks Marty. This is,exactly why I am wondering for 25% pos if it is really worth it.

I probably wouldn't take an AI because my bones are extremely small so weakening them would not be a good idea. I do love being on tamoxifen though. I used to suffer from insomnia and/or just wake up many times at night. I now sleep like a baby at least 6 nights a week. Also, my migraines that I suffered from since I was 16 have decreased to almost never since being on tamox. I love tamox currently!!!

I feel for you--it's so hard making decisions in the face of the unknown. A counselor once said that the goal in making decisions like this to be content no matter what the outcome. A couple scenarios are no-brainers: if you refuse the drug and the cancer doesn't return (yay!) or if you take the drug and have no side effects. But then there is: taking the drugs and having side effects or refusing the drug and having the cancer return or developing a second primary. Each person is different and gets to decide for themselves. My surgeon pointed out that with these meds you can always try them and see how the SEs are for you. (sometimes they recommend waiting a few months to see if the SEs settle down) You can also choose to take the drug for a shorter period, maybe just a couple years instead of five. (there may be studies on PubMed about the efficacy. When I researched tamox, the benefits are a bit front-loaded, so you get a disproportional benefit the first two years, but in total 5 years is better)

FWIW, in my case, I waffled about taking tamox. I was premeno, with a history of bone issues. When I took it, I watched my bone density closely and stopped tamox after two years due to bone loss. Then my surgeon found a lump in my "good" breast. U/S revealed it was just a fat deposit but that was a wake up. I also have a friend who had melonoma that was caught early with only a 4% risk of recurrence but unfortunately she was in the 4%. So those two events made me more concerned about recurrence and I restarted tamox (and became menopausal, so now tamox is helping my bone).

I hear you that it's frustrating that these drugs aren't better but I am grateful that we have these options. Some types of cancer don't have ongoing treatment at all.

Good luck with your decision and know that whatever you decide, it will be the right choice for you.

I'm in your same group of grade/stage cancer, and also considering avoiding AIs, radiation and any other chemo, but feel pretty alone and unsupported by my local medical team. I had a lumpectomy in April with clean margins and no lymph node involvement, so all these cancer treatments seem awfully heavy-handed.

But I'm still unsure and trying to weigh long term quality of life of these treatments vs what...life itself?

Anyone out there who has lived past 5years successfully refusing any post surgical treatments?

Thanks

Hi, and thank you both for responding. I was told chemo probably wasn't necessary, but that hormonal therapy would be beneficial. My concerns are my family history and current health conditions: severe degenerative disk disease throughout my spine, advanced ostioarthritis in all my joints, COPD, heart attacks with both parents and my sister suffered a severe stroke a year ago, leaving permanently paralyzed on her left side. My OncotypeDX score was 21, and I did speak with the folks at Genomic Health labs who performed that test. They said radiation treatments would only improve my recurrence risks from 6% to 3%, but they base their scores on the assumption that we all automatically will take tamoxifen for a minimum of 5 years!

My tumor was only 6mm...just seems like overkill. I guess I'll wait until my mammo in Sept, and take the herbs and natural remedies available to build my immune system and block my body's strogen. I had been on HRT for over twenty years, BC pills before that, and only stopped the estradiol when I learned of the cancer. So, with healthier lifestyle choices and faith in the powers that heal, I'm going to give myself these few months.

My prayers and best wishes to you all, and I'll let you know how I fare.

Thanks for being there!

Hi 282go,

They removed a good size chunk of tissue- 6cm x 6cm according to the pathology repport. The DCIS measured 3cm. and they found the microinvasion in just one "focus" of the tissue. It says largest dimension of tumor less than 1mm, nuclear grade 3/3 with micropapillary features corresponding to tubule formation of 3/3 as well.

I also wonder if they should have gone ahead and checked the node. The surgeon told me afterwards that when they found the microinvasion he consulted with other surgeons and they concurred that the node involvement was so unlikely it was not worth the risks normally associated with the extra surgery.

Thank you, 282go. Truth is I've already done so much research/reading that my mind is swirling with information & statistics. I'm finding it helpful at this point just to step back and see other women's subjective views who are going through these hard decisions.

Marty, I am not going to tell you what to do about further treatment - you will discuss this with your doctors. I just want to warn you against making such decisions based on the side effects horror stories one often reads online. People who are fine taking these meds - and that's the majority - do not take time to write reviews or even be on this site. Also, please remember that hormonal meds have proven to be the best treatment against recurrence in ER+ women.

I was diagnosed at 54 and have been on anastrozole (yes, generic and never tried the brand name - see no point) for the past 14 months. Except for some stiffness at the beginning and dry hair and skin I don't see any side effects. I exercise more now than I did before my diagnosis. I can't even say whether the dryness is caused by my being pushed into menopause by chemo or anastrozole. No hot flashes or atrophy in the lower department.

Best of luck to you.

I had lumpectomy followed by 33 rads sessions and in spite of my age at the time, 59, my MO decided to put me on tamoxifen for 2 years followed by 3 years of AI. He did not want to make my already thin hair (due to an accident) worse with an AI for 5 years. I only managed 4 months before stopping the tamoxifen. I could not sleep and it affected my ability to concentrate (I am a computer programmer, decided to go part time since dx). I was exhausted.

After a few months not taking the tamox. I was feeling better then my primary care decided that Effexor generic may be a good idea to enable me to start on tamox. again.This made me feel very odd from the getgo and after 6 weeks I stopped as I had stopped all exercise and had no desire to get out of bed. I was just watching movies and falling in and out of sleep when I was not working.. I have been off the Effexor for nearly 10 days and apart from some dizziness and fuzzy head I have my appetite back and am starting to feel better. I think I may get back to the Gym this week. I lost weight on the effexor without doing anything. If that was its only side effect I would have stayed on it for ever!

My recurrence risk was calculated at around 16% without tamox. or AI, 8%, with, but I think I am just going to eat healthy, get back to exercise and concentrate on QOL. At 60 its just more important to me personally to be to be able to do things I enjoy now that I have a little more free time and I can live with this risk without worry eating away at me. . I have no kids or grandkids. Its just DH and the dog and I want to be able to enjoy things on my bucket list. I am going to a long weekend workshop in the summer and it involves some hiking and a long drive to get there and back but its something I really want to do and there is no way I would be able to do it on these drugs. I was moderately fit before the Effexor.

If I was younger or had a young family I am sure i would feel differently and want to use everything possible to fight. I remember finding what turned out to be cysts in my breast when I was 38 and I felt terrible until I got results. I thought I was going to die. This time not so much even though it was cancer. Maybe its because most of my loved ones have passed at an early age and I am still here at 60 and want to make the most of it while I can - and the docs can't guarantee anything anyway.

Nestle, I am curious what your naturopath recommended as an alternative aromatase inhibitor and cream to decrease estrogen.  I have not found a local naturopath, and due to other health issues, have not started tamox or an AI. 

Professor50--This response comes from one professor to another. As I did my research into the anti-hormonal drugs, It struck me as totally contradictory, incongruent, and irrational that MO's push taking a drug that causes weight gain from one side of their mouths while from the the other side of their mouths they advise bc patients to lose weight to reduce recurrence risk! Likewise, with one side of their mouths they also push taking a drug that causes joint and muscle pain. while with the other side of their mouths they tell bc patients to exercise (which assumes the ability to move one's limbs)! When I asked the MO to please explain these illogical contradictions, she was dumbfounded and had no answer. Of course, because there is no rational explanation!

It just doesn't make sense to me to put a woman on a collision course with weight gain and/or inability to exercise, especially if she had a successfully excised low-risk tumor that was "cleaned up" with radiation (which is scientifically measured and dosed, not tried and changed several times on a hit-or-miss basis the way MO's play around with the abundance of anti-hormonals). With an Oncotype # of 12, I decided, actually with the MO's blessing ultimately, to decline any hormonal therapy (which has other long-term health effects--like stroke, clots, etc.--that could do me in sooner than a recurrence of bc would). Instead, I am maintaining a rigorous exercise regimen, have shed the 15 extra pounds I put on in the two years before diagnosis (this gain happened 13 years after menopause, by the way) and am keeping my BMI fully in the normal range. I am also continuing to lose both weight and fat sanely, and eat even more healthily than I did before bc.

That said, I no longer have young children at home (our boys are 44 and 40), so I didn't have that factor tugging at me. (But I surely do enjoy romping on the floor with our 3 granddaughters, 11, 8 and 4--and that is added impetus to eat right and stay fit so that I can keep on enjoying them!) It's a tough decision to make, and one that you have to be able to live with for the long haul--whether you continue to take the drugs or whether you decide to quit, you'll never know for sure what the other outcome would have been (just as we don't know how our kid would have turned out if we had--or had not--held him/her back for a year). TG

Although it isn't specifically related to BMI, you might want to check out this link:

http://www.lifemath.net/cancer/breastcancer/condsu...

It provides an algorithm (not produced, like Adjuvant Online, by pharmaceutical companies, which have a vested interest in our taking drugs) that asks you to enter (1) your tumor characteristics from the surgical path report, (2) other factors like age at dx, and (3) 3 treatment options (tam, AI, nothing) and then it calculates your survival and mortality predictions.

When I calculated for each of the 3 treatment options (tam, AI, nothing) I discovered that both tam and AI therapy would add a rip-roaring 3 months (!) to my life! For me, this algorithm was a godsend--3 months of added life is just not worth the risk of fatal long-term side effects that would do me in before a recurrence would!

My wife is weakly positive on PR and negative in the other two areas.  Her BS and MO are treating cancer as if she's trip negative.  My question is...can my wife receive hormonal therapy even though she's not a true triple negative?

Thank you and God Bless!

To tgtg, thanks SO much for posting this site, I had a lumpectomy one month ago, with SNE (nodes clear, ER/PR+, HER2-), for a 9mm lesion (with 4mm satellite next to it), Grade 1, Stage 1a, T1. My OncolDX score is a 5 with Tamoxifen, twice that (presumably around 10) without. My oncologist has suggested Tamoxifen to me, or some of the other aromatase inhibitors, but I just feel instinctively that it's going overboard...but who can know? The graph posted here was so helpful, such a relief! Tamoxifen would give me about 91 days longer life, essentially, at the 15 year mark (I'm 58). Not worth the side effects to me. Thank you again!