Questioning estrogen blockers

Hi Supernervs

Welcome to the forum and sorry to hear that you have been diagnosed with breast cancer.  You are right, the reason they want you to take the medication is to lessen the chances of recurrence.

Everyone reacts differently to the medication they put you on, some people like one the the women you work with have awful side effects, others have either lesser side effects or none at all. Bear in mind that if the side effects are too much for you your oncologist will either lower the dose or change your medication. You could also give the medication a try and if any side effects you have prove unmanageable you can always stop taking it 

Wishing you the best of luck with the rest of your radiotherapy and with whatever you decide to do as regard the meditation your oncologist wants you to take.

Best wishes

Daisy53

You could get a rough estimate of how they'd benefit you here breast.predict.nhs.uk/tool

Hi Supernervs,

sorry that you have joined our lovely club! I had similar situation in 2005, although I decided on mastectomy and had chemo as no optima trials then! I did eleven years on hormone blockers; with no cial media I didn’t know about side effects so didn’t have any. The statistics on survival pre hormone blockers are pretty convincing; my cancer returned five years after I stopped them. To be fair it is much more common to be cured, but I am grateful for the last sixteen years. 
you need to do what seems right for you though, not what did or didn’t work for someone else!  Good luck 

Mary

This is a really hard one, but there are several things to consider.

Prior to starting treatment, most doctors go by general statistics. One way to try and get around it is to ask for a projection that would be based on your own specific circumstances. The doctor may then say he cannot do that (not enough data to make a specific calculation) but it may be worth a try.

Regarding your colleague's doctor becoming angry: that should not have happened, but unfortunately such things do happen. I experienced something similar with my 2nd pregnancy, when I made a choice that an obstetrician did not like. I then refused to see that doctor again.

Regarding what is considered the way to go, medical "fashions" can change over time. Still with babies in mind, I can remember a time when the recommendation was to put newborns on their tummies, then on their backs, then on their sides. While cancer is different, changes in the ways they think still occur. I came across this recently when I was reading a research paper to do with supplements (for anyone who is interested:  https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4808891/ ) I am therefore wondering what science might say about hormone blockers, or certain types of hormone blockers, in ten, twenty, or fifty years -- will they still be doing it, with even more confidence, or will they be doing something else entirely? (Cigarettes were once very much approved, even prescribed, by doctors, and the people of that time viewed themselves as living in "modern times" just as we do now, and tended to trust their doctors even more than we do, I believe.)

My own conclusion out of all of this is that yes, I do listen to the doctors, but I never take anything on blind faith. If something doesn't sit right with me, I question it and try and find reliable sources of data, then have another discussion with the doctor. Fortunately for me, my oncologist is very much open to this and even encourages it.

In your situation, if you opt for the hormone blockers and then feel that was a mistake, you can always stop, but I would find out in advance if the effects are reversible. If you opt not to go for the hormone blockers, would you be always wondering if the cancer now has a higher chance of returning? What if it does return? While physical quality of life is important, so are other aspects. Once you have gathered all the data you can, note down whatwould be your response to to both worse case scenarios (bad side effects from hormone blockers, or a return of the cancer if you decided to forgo the blockers) and see if this results in any inclination either way.

What percentage gain do they give you? I'm struggling along at 4.5% extra survival rate in the next 10 years. For some women it's much higher and a no- brainer. At 1-2% it's likely less beneficial. You don't say the size and grade, if there was LVI present, the oestrogen out of 8 (8/8 = very ER dependent,  2/8 much less so) or the size of the positive node. All these affect the benefit of the AI meds. 

I’ve had a lumpectomy and radiotherapy (high dose for 5 days instead of the 15 days). They were also going to see if I was estrogen receptive (after I asked). The test came back us so was estrogen receptive of the highest level ( I had to chase up for the result). Should I be on estrogen blockers now ?? I haven’t been offered anything ?

From what you are saying it does sound like it, but this is for the oncology team to say. Since you have already had to chase things up when it came to finding out what type your cancer was, I am now wondering if again something may have been missed.

It is also possible they wanted you to get through the radiotherapy before they start with hormone blockers, so if you have only just finished that and have not seen the oncologist since, it is possible he or she is planning to tell you about the hormone blockers at your next appointment. I would still find it a little strange, because normally I would expect them to outline the full plan prior to starting.

I would certainly query this, then take any necessary action based on the answers you get.

For me, I wanted to take everything possible to help prevent it come back so I have never questioned the oestrogen blockers. My BC was very hormone sensitive though, at ER8/PR7 so if you block the hormones, the cancer has nothing to feed off.

I'm mid-40s so the surgeon said they're going to throw everything at me to help me live healthily for decades to come.

I ended up having chemo then lumpectomy. I was offered a choice of hormone blockers as I was pre-menopausal so I chose to be put into a medical menopause and then take an aromatase inhibiter on top as that gives the best chance of it not coming back.

I was more worried about the hormone treatment than chemo and a medical menopause was intense! I didn't notice a huge difference when I started taking the AI other than sore feet and joints which wears off everywhere very quickly with activity. The only thing that has stayed/got worse is sore wrists, but I use them all the time for fairly heavily activity. I don't think it would happened if I didn't use my wrists this way.

It is your choice whether you take all treatment offered. If you haven't had chemo, then you've not had anything to mop up any stray cells in your body so in theory, the hormone blockers would be stopping anything grow.

I'm a year and a half after diagnosis and coming up to a year after my main treatment. One thing that I have noticed is that the fear of getting cancer again has never gone away. It is always in the background for me, so every niggle that lasts any length of time, I get checked out. I have already had an ultrasound for a lump near my scar, and I am just about to be checked out for pain in my abdomen.

For me, I don't want any what ifs, and wondering whether you could have done more. 

Many women don't find the AIs any trouble at all. Before I started taking mine (exemestane), I looked up reviews of it on drugs.com and filtered on 10/10 reviews. There are plenty of women who get on really well with these drugs. The menopause was far worse for me that the AI. 

You can also switch drugs if one isn't working for you. I was told it takes 6 months for the side effects to settle but after that, switch to another and see if any better. Brands makes a big difference too. I was doing fine then had a new brand and felt awful on it - my GP put a note on my prescription to avoid that brand, I only lasted on it a week.

I also stay active to help with general menopause issues, like thinning bones, mental health etc and I take vitamin D, calcium and magnesium supplements which all help too.

Good luck with what you decide and remember you can change your mind or try lots of different options.

Hi, I have a broadly similar diagnosis (see profile), I looked at the stats and decided to follow the suggested treatments for my cancer which includes the longer term letrozole, zolodex & bisphosphonates all of which can have side effects….glad to report that, apart from the first few months, no ‘real’ side effects…or they’re so mild that I’m now accustomed to them. And in the first few months just bad joints (getting up from the sofa resulted in me making very strange noises!!).

Anyway my point is that if its the potential side effects that are your concern  I would try the recommended drugs for a while and if they’re unbearable then discuss with onco, stop or change….what’s to lose eh?

Good luck.

I'm on almost the same cocktail as you Yorkshire Defector.

Dx was IDC grade 2, ER+/HER-. Prescribed Tamoxifen immediately to prevent oestrogen feeding the cancer. Curable with surgery and 5xRT, however surgery showed it had metastases so upgraded to Grade 3 and had a 2nd surgery for axillary node removal. Still curable, but treatment would now also include chemotherapy. Of the total 14 nodes removed, 5 had cancer cells which necessitated a CT scan to see how far it had gone. Good news was no secondaries on organs or soft tissue but 'fuzzies' detected on spine. Sent for full body bone scan to confirm what fuzzies were. Found areas on same area of spine, and additional on rib and pelvis consistent with secondary breast cancer. I'm now stage 4 and with current technology and treatments, incurable.

Treatment is Palbociclib, Letrozole and 12-weekly infusions of Zoledronic acid for the rest of my life.

Praying that those in R&D continue their tireless work and find a cure. 

Sending hugs to all of us and our loved ones affected by this disease. 

Kathryn x.