I made the choice not to take Tamoxifen after trying it for 3 weeks. I became suicidal and thought, nope… I already had surgery, chemo and rads so I felt with no family history and otherwise good health I would rather be mentally stable and move forward. Well, here I am with either a recurrence or a new primary (same breast) 13 years later. WTF? I don’t know what my treatment will be this time. I have a feeling hormone blockers are in my future. I just hope they have better ones this time. I am far post-menopausal now since chemo cause immediate menopause.
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Ach, Rocky, that’s tough. This is the trouble with Er+ BC, it can come back years after. When will you know what your treatment plan is?
Not yet. I’m waiting for MRI results and a visit to my surgeon and oncologist.
Good luck with those. Let us know you get on.
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I’m sorry that the cancer has come back. If I could believe mine would not come back for 13 years, I personally would feel happier about not taking the Tamoxifen as I would be 89. I hope all goes well for you and it is completely treatable, please post again when you have more news.
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me too. i didn’t take tamoxifen as I had grade 1 tumour 2003 no lymph node involvement and in 2022 I had a new primary different type same breast. And a metastatic lymph node right next to it which was a hard lump like a tumour as well. But hindsight is all very well. I did what I did and had a lovely drug free breast cancer free 19 years. First time I was single and 47, now I am 69 and married. Aged 47 I had a massive mortgage, a short term job and our department was about to be reorganised so the last thing I wanted was to lose my job.
Now I am a bored retired raddled old woman of 69 wanting to drive at 100 miles an hour through the village mowing down litter louts and wearing leather and fishnet stockings, causing scenes at the level crossing. As I am a member of speedwatch I can’t do this so I live in constant frustration.
Seagulls
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I am in a state of readiness to channel my inner Hamlet. I see Sister Elaine soon with a urine and blod sample for my blood pressure and cholesterol review.
I wonder what Shamespeare would think of that?
Seagulls
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I think he gave Macbeth the words “throw physic (as in physicians) to the dogs, I’ll have none of it”. But then Macbeth was a flawed character so 
Good luck with the tests. My whole family have congenitally high cholesterol (Mum was five feet nothing and 7.5 stones all her adult life but had high cholesterol). It’s about time our testing caught up with the science and tested for small dense LDL and large buoyant LDL separately. Also turns out high triglycerides is the real baddie. No doubt they’ll just raise your statin 
Things have moved very fast. I had a biopsy on 8/6 and the results came in 2 days. My MRI was a few days after that and results also came back quick. My imaging center seemed way slow each time I was there and I was thinking hey, that’s great… not so many cancers right now. Who the eff knew it was going to be me? Anyway, I have already had my consult with my oncologist from the past and my surgeon from back then too. It’s basically one step at a time now. Blood work looks good and I started Arimidex yesterday. He thinks it’s ER+PR+ like the last time and wants to keep these tumors from spreading. He also mentioned Arimidex can shrink tumors so I suppose we can figure that out too.
I have a CT and a bone scan next week and if this isn’t all over my body (I really don’t think so) then I move to the next set of decisions. I, like you, have tried to think that I have had a great 13 years of no cancer concerns. Only during mammos would I have anxiety and with the all clear letter I was moving on. Well, right now I feel I can’t move. I am a tad frozen. My mind is filled with breast info and I am trying hard to distract myself.
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I’m 65, postmenopausal and I decided to take the hormone blockers, Aromatase Inhibitor Exemestane, because I was to unwell to have the Radiotherapy in the 12 week optimum timeframe. No Chemo despite one sentinel node affected, my margins were clear. Surgeon will review the blockers in 6 months time due to intolerances, although Exemestane is supposed to be gentler than most others.
I had a reaction to post surgery complication treatments that lasted 13 weeks.
I couldn’t get out of bed let alone drive daily to the hospital for 3 consecutive weeks. But I’m to receive ultrasound every 3 months over the next 6-12 months.
My family homeopath of 15 years, has a remedy to help me with any side effects should I need. So far so good with the ER blockers🤞🏼
I’d suggest trying blockers, research shows better outcomes than chemo or radiotherapy to reduce reoccurrence. My team have all said there’s no definite answer, but blocking oestrogen will certainly help.
For me I’d like to improve my chances, to be around and to take a new alternative drug, which kills the cancer stem cells by eliminating the protein. Hopefully it’ll be available on the market, and from the NHS within the next 5 to 10yrs🥰
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Agreed been taking 5 years no side effects bone density normal and 5 more years to go . Keep moving eat well take plenty of exercise and take the meds . Game changer in prolonging our lives why mess up by not taking them
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It is great that you are finding the treatment successful and that you have not had side effects during the 5 years, but spare a thought for those of us who have had a life turned upside down by the hormone therapy. Of course, as I said previously, even if I had known that I would suffer crippling side effects, I would still have given the treatment some time, but after 5 years, I want some of my life back and I have stopped. What that means for the future is unknown for me, but to feel a little like you do each day, I can only stop the treatment. I wish you continued good health.
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I am so glad you brought this up. I had my lumpectomy in November. In January I started on Anestrosol. I was on it for a month and had so many side effects like extreme muscle aches and pain in my hands, fatigue, and just feeling like crap. I said to myself at 72 do I want the next five years feeling like this? My answer was no. My oncologist wrote a prescription for another one but after reading about it, it had the same side effects. So like you, mine is sitting in a drawer untouched. I chose quality of life and leave it in God’s hands.
Let’s keep the faith!!
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Perhaps we should all comment after our first mammograms. I’m terrified of secondary cancer, but at 76 I still choose quality of life over quantity. I’m probably wrong, but I’m not even trying the Tamoxifen to see if I tolerate it, I can’t stand thinking of what it might do to me. I really hope I’ll be one of the lucky ones and not have a recurrence, but it can still happen if I take Tamoxifen.
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@balchik - totally with you on this. I’m 78 and been on Letrozole for 7 months. The side effects are awful for me but I’m also petrified of the cancer coming back. My first year check up is in November and I will be having a very serious conversation with my surgeon. Stay strong, we’ve got this xxx
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I haven’t had my 3 month pro op follow up yet, it’s late, but I know my oncologist will still tell me to take Tamoxifen. She calls a spade a spade & frightened me a bit regarding secondary cancer, but I’m still not taking them. I’ve got through the 2 operations & radiotherapy relatively easily when I read some of the comments on here. I now feel fit & healthy apart from the odd bout of fatigue, I can’t bring myself to risk any of the side effects from Tamoxifen, I don’t want to ‘tolerate’ them. I haven’t come across many ladies who just don’t take them, so let’s hope you & I are amongst the lucky ones who do not have a recurrence. All the best.
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Hi @nicnac17 , to answer your question I am not taking biphosphonates. I didnt fancy the 6 monthly IV so was prescribed Ibandronate. However I couldnt take that as its not water soluble and I cannot swallow tablets. I asked about Binosto which is water soluble Alendronic acid but onco said it doesnt have any anti cancer properties and gp wouldnt prescribe because of side effects. My first dexa scan showed I have ostepenia. I am 67 yrs old. My predict score indicated a smal percentage benefit of biphosphonates so I now take vit d on prescription and magnesium citrate which I pay for. I also eat a healthy diet with calcium containing foods and do weight bearing exercise. I had grade 3 IDC er+/her2+ on biopsy and her2- after removal. As for AIs I am taking Letrozole with mountains of side effects (since nov 23) but sticking with it as I was ER 8/8. Am currently down to take for 10 years but onco will review after 5 and told me that its ineffective after 7 (the remaining 3 years are to prevent a new primary). I only take it 6 days a week. That helps me cope mentally. It makes no difference to side effects as the stuff is in the body for 2-3 days. Hope my input is of help. Love Tulip x p.s. I have no idea what an oncotype test is. It did not feature in my care.
Hey there @nannabee if you get to see your surgeon after your mammo in November, or indeed the radiographer that takes the images, ask about your breast density (if you haven’t already). The Breast Density scale (BI-RADS) runs from A to D, with A being mainly fat and D being dense breast tissue. As we age our breasts get more fat and less breast tissue. I was told at my first annual mammo check in 2023 that I was A-verging-on-B which means there is less breast tissue to go rogue and, if it does, it is easier to see when small (she actually said “I’m surprised you had cancer at all looking at this” - well, I did! 
). So that may help you decide whether to bin the Letrozole. I had my second mammo check in July and got the results a week ago (summer holidays to blame apparently) and the letter just says that they can see “nothing suspicious” and they’ll see me next year. I’d have preferred “your boobs look absolutely fine and dandy, please don’t give them another thought” but “nothing suspicious” will have to do!
Hi Tulip29, that’s interesting about the Vit D and Magnesium citrate. I do take a Vit D but was going to ask Doc about magnesium. I’ve just had meeting with onc on Thursday for consent forms to start chemo next month and said I’m still undecided about hormone blockers and biphosphonates & he said he’d work with whatever I decided on and I still have time to change my mind. My biggest concern is since coming off HRT in April I’m falling back into the depths before I went on HRT and taking hormone blockers seems like the next level of hell for me. Now I’ve not taken HB’s so don’t know what my reaction would be, so maybe I should try as many have mentioned. I am 54 and worried about all the other side affects from taking the blockers and the impacts oestrogen has on other bodily functions, gawd even reading this as I’m writing it I’m flip flopping…… they gave me a voucher for a wig I just can’t believe this is happening and I’m having to make all these bloody decisions!!!
If you don’t mind me asking what kind of side effects are you having? Are they manageable?
Oncotype test is where your tumour is sent to a lab in the US and they do full pathology on it and can determine whether chemo will work for your type of cancer. My score at 31 was above the 26 threshold but considered grey area by my Onc and he advised to do chemo.
Best wishes
Hi @nicnac17, There’s so much to take in! I coped by just dealing with one treatment decision at a time and then whilst having that treatment taking the time to research the next one but I agree it is somewhat overwhelming. Thank you for explaining the Oncotype test. I am guessing it wasn’t offered to me because my biopsy pathology came back as HER2 positive so I think that means chemo is offered automatically. I only did the EC (before surgery) and refused the Paclitaxel. Amazingly my tumour pathology came back HER2 negative so I don’t regret only having the EC and, as it happened, it didnt shrink the tumour anyway.
You asked about my side effects on Letrozole. They are chronic insomnia, pain in back and hips, dry vagina and its best buddies stress and urge incontinence, dry scalp and hair, dry,splitting fingernails. i have been on it for 9 months. I’ve heard that side effects can ease off after 6 months or so - I live in hope! Until you try it and see you will never know so I would give it a go if its recommended for you. It took one month for things to kick in so try and give it a few months, six if possible, to assess your own situation and then talk with onco re alternatives if necessary. For example I was offered Tamoxifen but cannot take this because I have a large uterine fibroid and failing eyesight due to type 1 Diabetes. Now for some hope…Drinking plenty of water will help as the HBs dry up the body and reduce water retention so that is a safe and easy way to put it back. Eating a healthy diet is always wise (plenty of leafy greens), as is taking exercise. I walk everywhere and do the weekly Strength and Stamina class run by Penny Brohn. My GP has also referred me for 12 free ‘Get Fit After Cancer’ sessions at the local leisure centre. I use lactic acid vaginal pessaries and coconut oil for the dry vagina and that has eased off the stress and urge incontinence. I am booked on a virtual nail care workshop tomorrow run by Look Good Feel Better to find out how to fix my nails. I only wash my hair once a week and have recently started using T Gel coal tar shampoo. I use leave in conditioner, aloe vera gel, and diluted Rosemary oil on my hair. As for the insomnia that is more tricky as already follow all sleep hygiene protocols, use Yoga nidra sleep meditation, maintain a one hour wind down time before bed etc etc. I also follow advice on the Sleepstation and CBTi VA apps. After attending an excellent ‘sleep workshop’ at the Royal Free Maggies Centre I have also been practising sleep restriction. As that isnt working I now have a referral to the NHS sleep clinic. So…there are things that can be done to help with side effects IF you get some.
I wish you all the very best with your ongoing treatments. Love Tulip xxx
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