No Hormonal Therapy - Roll Call

I stopped after a few months due to the horrible side effects. I am 77 and have read a study that finds women over 70 get very little benefit from the hormonals. That did it for me --my onc did not agree with the study though. I did not go back to him as I figure my internist and/or cardiologist can order my blood tests and I can order my own mammograms.

I am happy with my decision.

Tried Tamoxifen and started getting my first migraine auras ever ( I'm 67 ) which increase stroke risk. Can't take AI's because I have vitreomacular tension and AI's plus Fosamax increase the risk of retinal tears. So-- lumpectomy, no rads, no hormone therapy. Oncologist is actually OK with this as long as I keep getting monitored regularly. She agreed that quality of life is most important and stroke or blindness have a greater negative impact than a "possible" chance of cancer recurrence.

Was diagnosed 5-1/2 yrs ago at the age of 47 and felt ambivalent from the start about taking any type of estrogen suppressing or blocking drugs. I was going through perimenopause at the time and didn't like the changes that were going on in my body already with lower estrogen and felt that it would only get worse on any of these drugs.  But I did take tamoxifen for 3 years due to fear of recurrence.  I interrupted it 7 months in because of side effects, and after 6 weeks, restarted.  I did have more aches and pains on it, more sleep problems, dry mouth, vaginal discharge, more difficulty with orgasm, and I was more susceptible to coughs, colds and all kinds of eye irritations.  I always wondered if these effects were from the tamoxifen or going through menopause.  I stopped taking it to see what would change and because I felt that I really didn't need it with my stage 1BC and healthy lifestyle changes, vit. D supplements, etc.

When I told my Onc, he talked me into taking aromasin, but I told him I really hated the idea of taking this, as I didn't want to be totally deprived of estrogen.  He told me that I was no longer making any anyway, and that this wouldn't make much difference. I waited 2 months before starting it, to get the tamoxifen out of my system,  during which time hot flashes actually got worse for awhile,  then slowed down. With the aromasin,  I started feeling foot pain, which affected my walking,  and falling and staying asleep became a bigger problem, and I started to feel drier skin as well as down below. After 2 months, I decided I was done, did not want to take something that I felt would possibly age me more rapidly.  I figured, with my diagnosis, the odds were greatly in my favor to not have a recurrence, and along with now exercising regularly,  and other healthy changes to diet and lifestyle, that  I was doing enough.  Onc was not happy when I told him.  I explained that I need to be able to walk without pain, and that I already had sleep issues and couldn't tolerate something that made it worse. I had already gone through all the sleep meds and remedies while on tamoxifen and don't want to repeat that experience!  He also told me that 3 years of hormonal therapy were insufficient, and wanted me to consider going back on tamoxifen,  but I declined.

It's been well over a year since I've taken any prescribed meds. I still occasionally get hot flashes, still have some trouble with sleeping on occasion,  and do have to pay more for comfortable footwear now, and can't go as nonstop as I used to, need more breaks.  But I never get sick now, eyes no longer bother me, skin and hair look great, and have had no issues on mammos/sonos.

I never wanted to take Anastrozole in the first place, but my MO finally convinced me. (My mom always said "You won't know until you try...")

I lasted a year. By that time, the SEs were debilitating: extremely high blood pressure; chronic joint and muscle pain requiring Norco and Valium and using a walker; trigger finger and thumb; "Lady Parts" issues; bladder problems; and crushing depression.

The MO gave me a two month drug holiday, during which, all SEs nearly disappeared.

When I saw her at the end of the holiday, I wanted her to say, "O.K., you're done." But she didn't. She asked me to try Femara, and I said I would. It's only been 2 weeks, and I may be having a few SEs, but truthfully, if I ever get to the place I was on Anastrozole, I will stop. No Tamoxifen for me, nor Aromasin. She knows my QOL is more important that the risk of recurrence from a 1.5 mm tumor with no node involvement. I have my next lab work in January... that might make a difference, too, if there are SEs I can't feel.

Blessings - How on earth did they find a 1.5 mm tumor? I want your radiologist! Your stars were aligned!

I really am sorry that you had a new primary, Bluepearl. Unfortunately, on or off Tamoxifen, some people still get a recurrence or new primary. You may or may not have gotten it anyway and you made the decision you thought was the right one at the time, as you are doing now. It's really all anyone can do. You definitely shouldn't dwell or agonize over something that you can't change now.

For me, QOL was a huge issue. I think it would have ticked me off more to suffer for 5-10 years, and still be one of the people who got more cancer anyway. There were things I could do to reduce risk and improve the quality of my life and health. I've decided to take that road. Since diagnosis, I changed my diet and exercise but steadily gained weight and remained chronically exhausted. Now being off Tamoxifen, I'm finally losing the gained weight (now only 10 lbs to go!) and I'm getting adequate sleep. My risk was low and I do believe that those life changes will go a farther way toward prevention than a 20lb+ weight gain and no sleep on Tamoxifen ever would.

My oncologist encouraged and prescribed Tamoxifan after I had lumpectomy, chemo, radiation and one year of Herceptin. I reviewed the research and found that the clinical benefits of taking Tamoxifan for women who are PR- and HER2 positive without strongly positive ER receptors (my score was 6) are not endorsed by the research. My onc agreed but said Tamoxifan would still be recommended. My opinion is that if you cant prove the benefits through research then there is no basis for recommending. When I had an early recurrence of DCIS, my onc said bc the DCIS was of similar characteristics of my first tumor... high grade, and came back so quickly it is unlikely tamoxifan would have prevented it. Still, she is recommending it again. I've been treated twice in two years for breast cancer. I had salvage mastectomy right breast about 7 weeks ago. Even though it was scary, I am not willing to take a drug that nobody has been able to convince me of any proven benefit. I think it is time for me to live my life and stop treating with oncologists and doing the mammograms and mri's. I fought my fight and I had a recurrence anyway. fortunately it was treatable but I am tired of trying to outwit this disease. Psychologically, I need to let this go and live my life and stop going to all these doctors and having all these screenings. Not to mention the cost... two years of cancer treatments and diagnostic testing and drugs has crippled me financially. I need to focus on work, my debts, my friends , my family. If the cancer comes back fine I will deal with it but I'm not going to keep looking for it, screening for it, or reviewing every pain or discomfort I have with oncologist every three months. That is just where I am at today.

Age 40 at dx,  sent into menopause by chemo, after one year on Arimidex bone density plummeted and Onc stopped Arimidex, considered tamoxifen when period returned at 2 yr mark but Onc was still concerned about the long term effects of the low bone density more than recurrence. I had 4 infusions of zometa and last dexa showed an 8% improvement in BMD back into the opteopenia range. both my Onc and myself considered tamoxifen again late this year as the new study showed benefit taking it for 10 years but since I'm almost 5 yrs out ant enjoy having estrogen in my body I decided not to start taking it.

Oceana, you can put your particulars in cancer math, but a large, stage III node positive cancer generally has a very high recurrence risk.

Hi BayouBabe et al,

I am one of those who "missed out" on trastuzumab because my onc was not in harmony with the trials when they were in progress, and I knew nothing about the trials at the time. So, I never had it. At age 51 in 2002, I did lumpectomy, SNB with no positive nodes, CAFx6, IMRT rads, and then tamoxifen. The baldness with chemo and the intense projectile vomting with every single one of the 6 CAF treatments was difficult but as some seem to like to brag, they were "do-able" for me. Upon completion my responses and comfort with sex were as they had been previously, quite enjoyable.

Within 2 weeks of starting tamoxifen, my sex life was over completely and never recovered, and I lost all sense of gender, which also has never changed since then. At the time I was traumatized by that because not only had my onc described it as "just hot flashes", he had never once discussed anything connecting effects of chemo or tamoxifen with sex. I was totally blindsided by it. I continued the tamoxifen at full dose for a year, and then at half-dose for another 3/4 years. I could stand the hot flashes, but the intensely painful sex and completely loss of gender drove me off of it. I still am horrified that anyone would presccribe it so casually without having any accurate genuine knowledge of how damaging it can be. I understand that studies have demonstrated that a portion of HER2 positive patients (those with a high AIB1 level) are MORE vulnerable to recurrence if they are on tamoxifen, as well. I presented that information to my medical providers, and instead of discussing it intelligently with me, they treated me like a child and changed the subject to taking an AI, since according to them I was now likely "postmenopausal".

Given the rather significant failure of my medical providers to be up front about any of it with me, I chose not to do an AI, either. Nine years later I am still NED. I work at trying to lose weight, since I am just above normal weight range.

I take very low-dose metformin with meals, which I believe to be as effective or more so than tamoxifen for me, since IT is considered to be effective against stem cells, which chemo and tamoxifen and AI's are NOT.

My older sister had bc 2 years before me and was also recommended to do tamoxifen. She never did chemo, and she refused tamoxifen. She has never had recurrence of her IDC of 14 years ago. Four years ago she had onset of a different type of bc, IBC. She went through chemo. Her onc openly admitted that likely it did not help. She is on Femara and remains NED at 4 years out. She is very obese, and does not take metformin, so I worry about her.

The Medical Onc said no hormones for me due to risk of blood clots.  Needless to say, I was happy to hear that.  He did ask if I would be interested in a Herceptin study going on, but the odds that I will qualify are pretty small. 

Is there a substantial risk factor for not following up with hormone treatment?  How much of a risk is there?  Seems a lot of women opt to just get off of it after being on it for awhile.

Thanks for all the great information here.  I am almost half way through chemo, and will continue Hercepting through 2014.  I have been wondering what and when my MO will recommend as far as hormonal therapy goes.

I feel I have been very agressive with treatment so far, opting for the DMX and not balking at doing the chemo.  However, I am just not feeling so sure about the hormonal therpay, especially hearing about the side effects and hearing time frames like 5- and 10-years!!!!  I am starting to do my research now so when the time comes I don't end up feeling like I don't understand my options and get pushed into doing something that causes me other problems down the road.

I am seeing my MO next week in prep for my next chemo round.  I am thinking I will try to guage what he is thinking as far as hormonal treatment goes.  It all just makes me very nervous!

Yep....I did the Tamoxifen, Arimidex and then Tamoxifen again.  Finally, after three years I have chosen not to do anymore!  I quit taking my hormonal therapy three months ago and I feel pretty good.  I don't have the horrible hot flashes 20 times a day, joint pain in my legs and arms daily, nausea popping up twice a day requiring me to lay down, eye irritation, memory getting worse, fatigue, and all the other side effects.  Told my doctor that I just wanted to live and be happy, quality of life is better for me.  This journey is incredible and I want to be happy, not sick anymore.   Everyone handles the hormonal therapy differently, our bodies handle it differently.  If the medicine had side effects, somehow, my body got all of them and it just wasn't fun.  I'm a pretty tough person.  Had a mastectomy with no pain medicine after surgery, did chemo with no pain medicine and had radiation with no pain medicine.  But, thanks to chemo, I did get all the aftermath (gastroparesis, neuropathy in hands and feet, mixed connective tissue disease and chemobrain).  Still loving life, but no more medicine.  Quality of life is more important.  Everyone's journey is different.

Oceana ... I hear you about the weight gain.  I put on major pounds after my treatment.  It's taken me well over a year to lose 40 pounds.  The really hard part is keeping it off.  I'm an easy size 12 now and quite comfortable with that.  The only thing that worked for me was cutting back on daily calorie intake.

My doctors (surgeon and PCP) were most unhappy when I told them I was discontinuing hormonal therapy.  What was interesting is that my surgeon's wife had breast cancer 12 years prior and never took Tamoxifen. I asked him why she didn't take it and he did not have an answer for more.  I think she had DCIS.  Anyway ... kind of funny that he was so angry at me and his own wife refused them as well.

I don't regret my decision ... it wasn't easy to make.  If I have to deal with a recurrence in the future and hormonals are necessary, I'll deal with it when it comes.

Blessings to you as well,

Bren

Dear Bud,

Sorry to hear of all your stress.  And I don't have any advice.  I do know of a couple of gals who have used grapeseed extract in lieu of Tamoxifen.  It sucks to be 38 and have to make such hard decisions. The good news is you can give yourself permission not to make a decision about it for another week or two and perhaps you will be able to get some sleep.  Being exhausted from lack of sleep caused by stress and expander pain makes it really hard to make a decision.  If the lack of sleep continues for much longer, I would ask the doctor about some kind of sleeping remedy .. just as a temporary solution.

Sending you a big hug,

Bren