Having recently had a lumpectomy on a 10mm, oestrogen receptive, invasive lobular carcinoma where lymph nodes were negative to cancer, I'm now faced with the decision of whether or not to take the aromatase inhibitor Letrozole, after 7 weeks of radiotherapy. I'm keen to hear from others who have travelled this road and had to make this important decision. Deirdre

Great to hear from you Helen. You've done well to handle the side-effects, as these are some of my greatest concerns with any hormonal treatment. The clinical studies on the longer term effects seem to only be for 5 years after cancer, with a few extending to 10 years. I'm more interested in the effect in 20 - 30 years time as at 57 I'll only be 77. To a younger doctor this may seem old, but to me it is still quite young. My paternal grandmother lived until 99. The risks of getting uterine cancer and memory loss seem to increase around this 20 year zone, and having watched my maternal aunt die last year of uterine cancer and dementia, at 74, 20 years after her breast cancer, it is scary for me. She took Tamoxifen for 5 years. Deirdre

My attitude is that if a tretment is offered one should try it. My mother was not a candidate for Herceptin which would have meant she'd been someone with advanced BC to go on the trial. She died a year b4 I was diagnosed @50. Mine being an aggressive triple positive one meant lymph nodes were removed 5 infected, radiation occurred to 4 places including axilla and I went through a chemo induced menopause and now have Lymphoedema. I was not a candidate for tamoxifen as I'd already had a DVT 15 years b4 BC surgery. I have been on Arimidex for 5 years this month and hope to continue for another 5 if that is what my oncologist wants now that the results of the long term trial are out. My grandmother died of leukemia @68, another of possible ovarian cancer after war time deprivation in europe; 2 great aunts lived to 95-96 while Mum survived 26 years after an uneccessary mastectomy with no further treatment given. (My surgeon would have given her a lumpectomy the first year he was operating) I am glad I have had all th treatment I have had and expect to live a long and full life, Carol

Hi girls, I have never participated on an online network before but I am feeling the need to express my frustrations somewhere! My family doesnt get me anymore, they think my bc journey is over and should get on with life. I cant. I dont like my new 'normal'. I took Arimidex for 3 months and felt dreadful. Bad headaches, depressed and felt my body weighed a ton. My Oncologist took me off those and put me on Aromasin. I took these for 6 months and continued to feel depressed, suicidal, ached all over and extremely fatigued. Recently a good friend made me go back to my Oncologist to discuss how I was feeling. I didnt want to waste his time and felt I just had to put up with these side effects like thousands of other woman are. I eventually went to my onc and he was wonderful. Im now off the Aromasin for 4 weeks then I have to start the Tamoxifen. Im so confused about what to do. Im 52 and used to be a happy, social person, Im now miserable all the time and dont know if its worth taking any hormonal treatment. Is a miserable life now worth it, to perhaps reduce a recurrence? I had a stage 2 IDC, no lymph node invasion. I had two surgeries to get a clear margin and 6 weeks of radiotherapy. From all accounts an early bc with good prognosis. I am lucky, I know this. So many women have much harder roads to travel. This period of time after all the invasive treatment has finished I am finding so much harder. I guess I just want to know if anyone else feels like this on these drugs? Debbie

Have been on Arimidex for 5 years. Was 51 when started, Chemo put me ttrough menpuase after a decade of doctors telling Any complaint, migraine etc was because I was perimenopausal. Arimidex & other treatments have caused arthtitis, elevated hypertension, 6 kg weight gain, cholesterol issues, partly responsible for ostepaenia but put with up with this because at least I am cancer free for 6 years after triple positive high grade 3 cancer with lymph nodes infected and Lymphoedema. NOthing would ever make me go on Hormone tratment not b4 BC diagnosis and certainly not since. As I understand it aromatase inhibitors & tamoxifen remove hormones from hormone positive cancers. Check very carefully with oncologist b4 using ANY hormone tratment. I too felt down when 18 months of chemo & herceptin finished and still was suffering chemo brain. But I just took the attitude one has to soldier on in spite of monetary hassles; husband with bipolar; do what one can & can or delay what one can't

Aromatase Inhibitors: To use or not to use?

25 Replies

Boatgirl
Member
11 years ago
Hi Debbie

Hope all is going well.

I've been reading your posts from 2012 and wonder how you're getting on and what you decided to do about hormonal treatment.

I'm still in the undecided group.

Best wishes

Deb
LisaC
Member
12 years ago
This is my first time here as well and the reason I feel compelled to post and join is partly what Debbie has described. I have only been on tamoxifen for just over 2 months but feel unmotivated, teary and not my usual self. I had bilateral masectomy with tissue expanders and am due for exchange surgery in March. I was lymph node positive however I tolerated chemo quite well, although it wasn't fun but felt my life was getting back on track. My energy was increasing, I increased my work hours and my zest for life was on the "up". Throughout treatment I walked everyday and started recently trying to increase my exercise. However now that I am on tamoxifen I am a different person. I totally identify with you Debbie and it feels better that I am not the only one....Lisa
Jk48au
Member
13 years ago
Hi again The need for all services including palliative services is very necessary. I realise that not every town can have all services, but there needs to be enough of these services in bigger towns that can be accessed by all. We lived for a short time, in a small nsw coastal town, that had wonderful ambo's and doctors, but anything else, even a simple X-ray had to be done elsewhere. The closest big hospital was Canberra. Thankfully, when I was diagnosed in October 2012, we had moved back to a large regional area that has most if not all services. As for us getting behind a push for more palliative care, I am willing to back it. Let me know if there is any petition that you need a signature on Regards Jill
Carol
Member
13 years ago
yes certainly side effects far better than wondering if it will come back. Especially having had an aggressive cancer that I could feel growing!

With the constant improvements, I am certain some of my side effects would have been better managed by the newer anti emetic and other drugs available now than 7 years ago.

My mother was not offered any treatment other than the botched unnecessary radical mastectomy in 1979 which caused much pain and distress. She pleaded with the doctors to provide her with either chemo and/or radiation to no avail. She had 15 years cancer free and a further 11+ years of secondaries & pain b4 death.

Having lost my father recently (the only non cancer death in my extended family), I would plead for us to get support for more palliative care beds. Mum died in Neringah but his cardiac specialist refused to allow Dad to even be assessed so he was moved to a nursing home, where he was classified as palliative and died a few days later. He would hve had less pain and suffering had he gone to Neringah which had the added bonus of being closer to many of us who visited him in the Nursing home while he was there in a 2 bed room.

Carol
Jk48au
Member
13 years ago
Hi vanstrada It would appear we are both at the same stage of our journey, and like you, I am reasonably comfortable, the pain I have been getting has eased, although I have just suffered through a major headache over two days, but had a massage today, and my neck muscles have been released and feel much more relaxed. Your question of would I have chemo again? My first reaction, knowing how sick it made me, would be NO. Then I would need to know what the prognosis would be if I refused it, and make my decision from that. It is dreadful and makes you feel so sick and dreadful, but if it can save you from the ravages and pain of the cancer, then maybe my answer would be yes. Let us all hope we don't have to make that decision Regards Jill
vanstrada
Member
13 years ago
Hi Jill I had my left breast mastectomy last November .I am recovering well and reasonably comfortable . Remember your body has gone through major surgery and the pain you are experiencing is your body healing . You may always have the pain hopefully lesser over time ! I am on Arimetex too and so far very happy with it . A personal question ! would you go through chemo again ? I am very happy that we are able to take medication instead of chemo .The journey continues !
vanstrada
Member
13 years ago
Being part of this group I am not sure what I am allowed to post or not so please don't mind my post .This diagnosis of my breast cancer is interesting to say the least . I have found that in the past that I was always aware that as a woman breast cancer could be a possibilty not that it was part of my life plan ! lol But now 6 months later my attitude is Been there done that and I am still here! After surviving the disaster of the Grantham Floods cancer has been easier to deal with . But it doesn't change the fears and concerns . Research is good but does not replace the companionship required between ladies that are sharing the journey . Support is necessary but like surviving Grantham you just can't talk about it to anyone only someone else experiencing can help . I live in Gatton Qld and would love to hear from anybody else that would to keep in touch ! Nice to se your messages .
Jk48au
Member
13 years ago
My journey is continuing, chemo now finished, thank goodness. I was so sick with low white cells, nausea, fainting and allergic reactions, but I stuck it out, even when the oncologist said I didn't have to take the last dose, I still had it and put up with the side effects. Now on herceptin plus arimitex which so far, not any noticeable side effects from either. The arimitex seems to be ok with only slight pain in my foot, which I had an operation on last year. I am a little concerned of the effect it can have on my bone density, have had my scans done and although my left hip is a little down, it is within the guidelines. I also take Ostelin Vit D with Calcium, which my Oncologist told me to take. My only problem now is pain that I have developed in my scar and chest area, which I have been told is nerve pain. I do hope you are all coping well with your respective treatments, keep in touch, if anyone wants to private message me, I am happy to do so, especially those that are in more regional areas Regards Jill
ToniS
Member
13 years ago
Good afternoon,

it is good to hear that you are going well with the medication.My diagnosis was in May 2012, so it all startd a year ago for me. I had a lumpectomy and radiation therapy. I started on arimidex but had a side effect of vitigo, which appered suddenly in the 3rd week. This is apparently unusual but the surgeon I see said I was the second person recently to have what he termed an "Inner ear" reponse. I think the other person had tinitus. The virtigo was very diblitating and took nearly 6 months to completley go

I am now taking Tamoxifin and thankfully like you I cannot detect any side effects. We are very lucky!

You sound as though you are putting in a big effort into having a healthy lifestyle, well done. I agree that our lifestyle can have a significant bearing in maintaining good health.

I too am out of the urban area and live in Northern NSW.

Good luck!
ToniS
Member
13 years ago
Hello Jill,

Thank you for your response. This is a quick reply from me as at this time of year everything just gets busier and it is a challenge trying to stay in control, if only of yourself.

I wish you well in this next weeks and onwards as this part of your treatment continues.

I am not really looking forward to trying the next lot of hormone therapy which will be Tamoxofin, but I know I will give it a go. I still have a remnant of the virtigo I developed with Arimidex but my headspace is now that I want every bit of prevention I can cope with. This is a change for me and I am a bit surprised myself. For me it has revealed that even when I think I know how I am feeling, it might just get reversed with another bit of information or experience.

Good luck, and maybe we will talk again

Toni