A newbie looking for breastfriends' s... - SHARE Breast Canc...

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A newbie looking for breastfriends' support...

Breastfriend
Breastfriend

Hello out there... I'm new to this site and fairly new to this Breast cancer journey we're on. Got diagnosed thru my yearly mammogram. Caught at stage 1 - small tumor and no cancer in my lymph nodes. Whew! Even with good news about my BC (someone said to me: "if you gotta get breast cancer, this is the best one to get"... ) nothing prepares you for the medical vortex you instantly step into in less than two months - from abnormal mammo, to biopsy, to diagnosis, to having a team of specialists (AMAZING folks all along the way), to lumpectomy, to radiation using the site-specific SAVI catheter (I would go this route again, but it was definitely more uncomfortable than the radiation oncologist let on!), to finding out my OncoType results indicated a pass on going thru Chemo (another Whew! Moment). With all this "great news" - why does taking an Aromatase inhibitor for 5 years put me in a state of feeling depressed... like I have no control - when they are presenting me with options? Being post menopausal seemed to leave me with two options - Letrozole (Femara) or Arimidex (Anastrozole). After doing my research and even reading posts by women on both drugs - the side effects that fellow women with BC have had sound horrible. I have to make up my mind and begin a drug of my choice this week. Does anyone have any positive feedback to share, about either AI drug? Or any suggestions on healthful strategies that you have successfully incorporated into your life to balance out the side affects? Thank you an advance for helping me along this journey.

24 Replies
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I've been taking Aromasin for 5 years and haven't had side effects

Good to hear. I'm going on Aromasin soon, after having side effects (joint pain) on both Arimadex and Lestrazole.

I walk a lot and do some light weightlifting, I think that helps!

Welcome to the community! I also was diagnosed in Stage 1 but had chemo. I've been on AIs since September 2013 and am currently going on my 3rd one, joint pain being an intense side effect for me. But...everyone reacts differently to these life-saving drugs. (The can reduce our chance of recurrence by almost 50% so we're lucky we have the option to take them, not like our Triple Negative Sisters, who don't have that additional layer of protection.) I suggest you come to a SHARE meeting for women on AI's and Tamoxifen (which I facilitate). We meet every 2 months in SHARE's main office. The next one is Tuesday, January 31 at 6 pm. In these meetings, we have many suggestions and strategies. Too many to name here!

I wish I could attend! You folks are based in Oakland, CA? I just relocated back to the East coast after 25 years of being out there. Is there a SHARE organization close to Providence, RI?

We're based in NY City. You can call Share's hotline from anywhere in the world but this the AI group is an in-person support group. I'll check with one of the admins to see if we have the capacity to do a phone-in conference call so you can participate from RI.

Actually... I did a little further digging and noticed the NY base... also "BklynCatwoman"!! How did I miss that?? :-)

If that's possible to join in remotely, that would be awesome. I'm use to that interface from my previous job in Northern CA. Thanks for your ongoing support!

We've never done a call-in to a meeting but this can be a first! Shoot me an email (cathybrown1059@gmail.com) and I'll send you the instructions. We'll try to make it work!

Can you tell me when this group meets?

The third Thursday of the month at 6 pm at SHARE's NYC offices (165 W 46th St, Suite 706). We can do a dial in if you're out of town. The next meeting is 10/19.

Dear Breastfriend, I am glad that you found our site and hope that it will be helpful to you. I had a diagnosis similar to yours in 2008. I chose to have a lumpectomy and radiation followed by aromatase inhibitors. No breast cancer diagnosis is easy! Individuals respond differently to aromatase inhibitors. I know some women who were on them for five years or more with no side effects at all! I was on three of them over a period of five years....arimidex, letrosole and aromasin. When the side effects with one became too difficult for me, my oncologist switched me to another. My experience with each drug was different. Switching drugs enabled me to make it through the five years. Letrosole seemed to work best for me, but I was on it only for one year, the last drug I took. Good luck. I hope you do well with the drug you choose.

Thank you oh so much! Your sharing of your AI experience is greatly appreciated. Wishing you continued good health....

mrsschwartz
mrsschwartzSHARE Volunteer

Hi there: please don't be afraid to take an AI as part of your treatment plan for Stage 1 breast cancer. Many women tolerate them well, hardly aware they're on a medication. Yes, there can be side effects, and some are unpleasant, but others are more of a nuisance. As with all meds, it's a risk v reward equation. The protection an AI offers can be worth putting up with some side effects. But give it a try ---see how it goes, and keep a dialogue open with your doctor, especially if you're unhappy or your quality of life suffers. Sometimes when one AI causes symptoms, a switch to a different one can be helpful. Let us know how you do and perhaps we can offer solutions or lend support down the road.

Will keep in touch... and I am going to take the plunge tomorrow. Thanks so much for your encouragement!

Hi Breast Friend - We have a very similar diagnosis. Also was told a very benign cancer, the best one to get. That's a blessing as difficult the road is. Going on 5 years for me taking an Aromatase Inhibitor. I started with Arimidex, had some joint pain in my wrists for awhile switched to another AI called Aromasin went off that because of insurance and went back to Arimidex and have been fine ever since. Everyone is different. The biggest side effect is decrease in bone density. So you have to check that every year. To prevent fracture I've increased my bone density by doing weight bearing exercise and also taking Calcium and D3 supplements. I'm still here, reached my 5 year survivor mark. I know it's overwhelming at first, it does get better as time goes on. Support groups are great, there's so much support out there. God Bless!

Oh my gosh... thank you for sharing all this! I have begun to take calcium & D3... I'm an avid Walker & just started doing some light work outs.... hoping all this would help counter act. Did you find that taking your AI med at nite vs the morning or visa versa made a difference??

Hi, Walking is great! I take mine after breakfast. In the 5 years, i've never taken at night. Whatever works for you. Some woman i've heard get hot flashes. If that happens maybe you would want to take at night. Either way, I think if there are any side effects it doesn't matter. I forgot to mention. Eat lot's of foods and vegetables that are high in calcium. eg: Kale, Bok Choy etc.

Hi I have had some of the treatments you have had as well as some I hope you never have to have. Fortunately I never had to be put on long term cancer meds but with all I have experienced on my twenty five year cancer journey is it is important to do as much research on every treatment option given and explore the ones that they don't offer that have proven to be helpful without the side effects.

God bless and guide you on your journey!

Thanks so much for your thoughtful reply Suzieqat! I decided to start the AI medication(I've been told it's a 5 year treatment plan)... and have focused my research on things I can do to ward off any possible side effects - like Tuber teas (ginger root & tumeric, pepper corns and yummy elderberries) to help with inflammation/joint pain - just to name one...

For now, I'm just taking one step at a time... and benefitting from Sharing my journey & questions with caring people like you & others on this site! Thank you!

Good luck and God bless.

I took Arimidex for five years to prevent a recurrence. Had some initial joint pain which went away after about a month. My oncologist told me I am considered a survivor because I have been cancer free for ten years! One of the side effects of Arimidex however is peripheral neuropathy which is damage to the nerves in places such as the feet. Sometimes I experienced pain such as throbbing or stiffness in my feet or legs. I went to a physical therapist who prescribed exercise and have not had this problem since then.

Hi there victorious Valerie! Thanks so much for sharing your experience... I decided to take Letrozole. It's been almost a month & I've experienced some insomnia and hot flashes, but both manageable and not consistent. Just taking one day at a time... hoping to have similar good news to your BC journey 10 years from now 😊

Congratulations on being a survivor & for sharing your story with others... thank you!

Hi newbie, My story is very similar to yours. I was diagnosed in May, surgery in July, I put off radiation as long as possible and so just finished up my three weeks on Sept. 27th. What a whirlwind of medical overload. I was stage 1 grade 2 Invasive LC. I am suffering through the after effects of radiation and putting off starting the AI's until after a trip in November. I wish I could offer some advice but I haven't been through it yet. I just thought I would reach out since our stories were so similar. I will say though that I have heard a variety of reactions or side effects to the meds. Some people seem to have very little trouble and others go through it with great difficulty. It seems to me like being forced through another round of menopause. It's easier on some than others. I totally inderstand your hesitation and indecision. I continue to try to push my onc to tell me ways that the medication can be avoided. His response is always that the research bears out the best results with the meds. I just realized that your post is nine months old. Maybe you aren't such a newbie and can shed some light for me on how it is going for you!

Hope it is going well.

I I'm new also. I've had clinical depression for as long as I can remember. It doesn't help when you get breast cancer, a lot of times I feel isolated and sad. I don't feel my family understands how I feel either. By the way I have stage 3 breast cancer, so far I've had a port put in 4 rounds of chem I was allergic to. Now I have to have a muggy test and back to 4 more rounds of a different chemo. Surgery in late January. Then radiation then breast reconstruction. I started last March and I miss my grandson everyday. I used to watch him everyday. So enough about me I'm here to listen and talk if you want to.

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