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had double mastectomy 25 days ago and on arimidex, now what?

nanniebgood
Posts: 42
Joined: Oct 2012

Hi im new and still overwhelmed. From finding lump to mastectomy as only been less than a month, still have not wrapped head around finding lump much less anything else, plus i've been blessed to have kept my drain in my cancerous breast to date, keeps draining, this is becoming wearisome. Im not here to whine but i need imput, my oncotype score was 13 which was good, i had stage I grade III invasive ductile cancer, my lymph nodes where clean but my margins were not, i opted for a double, having no issues with the noncancerous side. I was started on Arimidex 2 weeks ago, i am 58 and been post menopausal for 22 years. I have just started having "blinking" hot flashes, seems they never stop, mood swings are becoming worse, I don't even like me, im just a ball of emotions, plus for some reason i look pregnant, i was as my momma always said, "pleasing plump", but did not go in looking like i was 8 months along, i look, feel like a mess. I don't know what to expect next. Bless my husbands heart, he thinks that since i don't have to have IV chemo that im cured of my cancer, i know that im not, going to have a sit down with oncologist to help clarify and explain things better, like i said, it has been too fast and too much to take in. I just need to hear from others what to expect and not feel so uninformed. Please someone help me.

debsweb18
Posts: 191
Joined: Jun 2012

Sorry for the reason you're here. It's normal to feel like your life has been turned upside down. I also didn't have chemo, but had radiation after a mastectomy because of a small tumor on 1 lymph node. I did't start Arimidex until 3 months after my mastectomy (just after radiation was complete). It took many months before I started having side effects. I didn't have hot flashes (I didn't after menopause either)so I was lucky there. But joint pain got progressively worse and then the irritability hit! Everyone reacts differently and one drug may work better for you than another. After close to a year, my dr changed my to Femara. The irritability subsided substantially right away. Still have joint pain, but not as often. Headaches aren't as often. I'm sleeping better (I do take Lunesta)but I'm exhausted most days-I wake up that way.

This is only my experience. You've been through alot very quickly and although you'll have common experiences with all of us, just remember that everyone's different. Make sure you talk to your dr about your side effects.

My husband's like yours- although I'm back to work, he thinks I'm back to normal-cured etc. You'll run into a lot of people that will tell you "you look great!" and think you're ok now. You may be ok, but you'll never be the same!

Let us know how you're doing.

Deb

nanniebgood
Posts: 42
Joined: Oct 2012

thank you so much for responding, just hearing from everyone has been a needed boost. I realize that I am expecting too much too soon, but this site is wonderful, I'm so glad I found it. Making appt with onco with my husband and have a list of questions that we both need to hear and have answered. I really don't feel so alone now. Thank you

Kylez's picture
Kylez
Posts: 3765
Joined: May 2009

I am glad you found this site too and I hope that we can help you to feel better. Having the diagnosis of bc, surgery, rads and even chemo takes a huge toll on us. No one can understand unless they've been in our shoes. We've been there and done that, so, please keep posting and letting us know how you are doing.

You are not alone, you have all of us pink sisters!

Hugs, Kylez

eihtak
Posts: 1016
Joined: Oct 2011

You have come to the right place. This board is full of genuine help, care and concern from others who have been through similar experiences. We are here for each other like family 24/7, and no question is too little or too big to ask. I am still fairly new here myself but have learned a ton! I was diagnosed in Feb. 2012 with Secretory Carcinoma of the breast, (just 1yr after being diagnosed with Stage 3 Anal cancer treated with surgery, chemo and radiation). I too had a double mastectomy with no chmo/rad at this time. I take Anastrozole (the generic for Arimidex). During the first couple months I had constant hot flashes, bone/joint pain, mood issues, and bloating. After advice from others here I began taking the Anastrozole at night instead of the am. and as soon as healed from drain removal began some stretching and light exercises. I also limit my coffee to 2 cups a day. I take calcium, VitD and K, and an iron supplement. I now have a pretty regular exercise routine and go for brisk walks often. I can honestly say I have very few side effects anymore (just 6 months in). It may be that my body has just adjusted, but the daily exercise is also helpful for the mind! I remember feeling kind of pregnant looking also, but I think it was partly my mind getting used to my unbalanced new body minus breasts. You've been through a lot in a short time and will take a while to heal physically, but our emotions can take even longer. Unfortunately you will continue to have people who often mean well, assume that you are just fine, "cured" because you look good. I used to say, "looks are deceiving" and then explain everything I was still dealing with, but recently I am learning to just say "thanks" and something like "todays a good day". Give yourself a pat on the back, (if it doesn't hurt), you have made it this far. I will have you in my thoughts and prayers as you move forward in this journey, Please keep us posted on how things are going.

SIROD's picture
SIROD
Posts: 2204
Joined: Jun 2010

Hi,

Arimidex is an excellent drug for women who are ER or PR positive. Your cancer grew on estrogen and aromatase inhibitors (Arimidex, Femara, Aromasin) target hormones at the adrenal gland which is where we post menopausal women get our hormones. There are other places but that is the primary one.

I was NED after having two ribs involved on Arimidex for 8 years. I have fond feelings for AI as they are called. Give the drug time and you will figure out how to overcome the side effects. Every women has their own, some hurt more than others. AI are known for joint and bone pain. Hot flashes are part of the deal too.

A lot has happen to you and it will take time to deal with it all. This place is wonderful and you will find the people who post full of information and especially how to deal with the side effects.

Read all you can about bc. A good book though it is old is Dr. Susan Love's breast book. It does have good explanations on breast cancer. The drugs are now out of date with more being added since 2005. It remains in my opinion a good basic book on bc.

Good luck to you as you begin a journey you never wanted.

Doris

nanniebgood
Posts: 42
Joined: Oct 2012

Thank you for answering, this is really a wonderful site, the wealth of shared info is amazing, not every story fits but almost everyone has a moment that is relative to what I am going through, thanks so much

Megan M's picture
Megan M
Posts: 3001
Joined: Dec 2009

Just sending you a big hug!

(((( nanniebgood ))))

mamolady's picture
mamolady
Posts: 796
Joined: May 2011

Nannie,
Everyone has their story and you will find what works for you is probably pieces of different peoples journey.
I was overwhelmed for several months. Actually, just after treatment was over, I had a bit of trouble. When you are in the fight, you don't really have time to deal with the whole thing.
For me, I had chemo, bilat mastectomy and rads. I am also on arimedex. The hot flashes subsided some for me and it has only be just over a year on the arimedex. I also don't wear long sleeve shirts. I layer so I can remove stuff and not offend anyone! I keep japanese style hand fans everywhere too.
The bloating, I started jogging to help with weight loss. I also had a tram flap which took care of the rest of my belly. Menopause will cause the belly. For me it was tough to loose the last 7-8 pounds of the 25 I gained during chemo.
When you sit down with your oncologist, bring your list of questions and have a note pad to write things down. Bring someone with you because two listeners are better than one. This web site is also a wealth of information.
Cindy

nanniebgood
Posts: 42
Joined: Oct 2012

thank you so much, coming here has been like opening a door for me, somewhere I can talk and ask questions and spare my husband all my angst. He has been wonderful but soooo terribly clueless too. I'm so grateful that there is a place like this to come to, I'm rather isolated from my best friends because they live in different states and I hate to alway be calling to ask questions or cry or whine, not that they care because they don't but they were with me for a week and really cared for me and supported me, but then they have to go one back to their lives and now I feel adrift. Sooooo, grateful to have found this site, thank you all .

nanniebgood
Posts: 42
Joined: Oct 2012

thank you so much, coming here has been like opening a door for me, somewhere I can talk and ask questions and spare my husband all my angst. He has been wonderful but soooo terribly clueless too. I'm so grateful that there is a place like this to come to, I'm rather isolated from my best friends because they live in different states and I hate to alway be calling to ask questions or cry or whine, not that they care because they don't but they were with me for a week and really cared for me and supported me, but then they have to go one back to their lives and now I feel adrift. Sooooo, grateful to have found this site, thank you all .

Busymom0413
Posts: 8
Joined: Sep 2012

Sorry you are having to go through that. I too did not need IV chemo or rads. I also had a bilateral mastectomy. It is so true people think you are just fine if you do not need chemo but the Arimidex is hard on some of us. It has been hard on me. Husband does not understand because I get up everyday and do what I need to do. I even put makeup on everyday in the hospital and everyone would say you look like nothing is wrong. Sometimes I feel guilty because I did no have to have chemo but chosing to have a bilaeral mastectomy is no easy task. I hope all goes well for you with your oncologist. I too have most of my friend out of town so it can be difficult. This is a good site to just vent if you need to. Take care

nanniebgood
Posts: 42
Joined: Oct 2012

thank you so much, the decision to have the bilateral was hard enough and also not an easy thing to recover from, just had another JP drain put in today, appears im a bit on the juicy side!! im just starting to deal with the phyiscal side of mastectomy, nothing fits right, surgeon side my new shape( the new buddah belly) was here to stay but as i get stronger i can work on reshaping my core and quit pooching it out, no one ever mentions that no boobs throw off your sense of balance!! Im like you, im thrilled i don't have to have chemo, that i've gotten off with just no boobs but im always wondering how much is running around in my going unchecked. Why do we feel so guilty? What kinda of problems are you having with Arimidex, I just feel like im walking in thick mud, exhausted after doing anything, probably too soon to know, I've found myself pushing my self when i really don't feel like doing things, i usually end up paying for it later in the day, but the next time its a little easier, i just hate all of this, sometimes i just want to throw up my shirt and say THIS is breast cancer, not the cute little ribbons, tee shirts and things, but THIS. Like I said i'm just starting to deal with the physical and emotional aspect of my new self, but having whined about that im beyond happy and blessed to know that im here to whine about it, i praise God everyday that at this point this is all i have to go thru, i admire all these extraodinary strong and brave women on this site, it truly humbles me, thank you so much for responding, it really makes me feel better, thank you and i hope you have a wonderful day tomorrow, be strong!

mamolady's picture
mamolady
Posts: 796
Joined: May 2011

Be sure to let yourself heal. Your body has been through a lot, it takes time to recover.

Never feel guilty for not having more treatment. There is no such thing as an "easy" cancer treatment plan. We all have very different journeys but cancer is never "easy".

Cindy

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