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Stage 2 Sisters Club

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Comments

  • Molly50
    Molly50 Member Posts: 3,008
    edited August 2016

    Lemint, I understand that anxiety. Mine was read while I waited. Birads 2! I have since had a mx on my remaining breast. Pathology was just papillomas so benign. What a relief.

  • lemint
    lemint Member Posts: 76
    edited August 2016

    Thanks Hopeful and Molly. I don't know why they don't read it while I'm there. Urg!!!! BTW, how are you doing on the AI drugs?

  • ruthbru
    ruthbru Member Posts: 47,586
    edited August 2016

    Hi Lement. The first mammograms are so, so scary.....but eventually (believe it or not) they do become almost 'routine' again (routine in the sense that you do not automatically assume you will hear bad news!). I did fine on 5 years of Arimidex......my advice is to keep moving, keep moving, keep moving......which I better do right now. We just got back from a long weekend & I ate so much that the scale will probably explode when I weigh myself tomorrow!

  • Molly50
    Molly50 Member Posts: 3,008
    edited August 2016

    I didn't do well on Anastrozole after trying it for over six months but so far exemestane (Aromasin) has been pretty easy to tolerate.

  • hopeful82014
    hopeful82014 Member Posts: 887
    edited August 2016
    Lemint, I did GREAT on Femara for about 18 months then started developing side-effects all of a sudden, more or less. I liked Femara and had a strong neo-adjuvant response to it.

    My MO took me off AIs for 3 weeks, then switched me to Exemestane (Aromasin), which is working out well so far. I'll be on an AI for at least 10 years total and won't be surprised if I switch around a few more times over the course of the decade. Whatever it takes!

    Don't be swayed by all the horror stories you'll read - many women do just find with them, although it make take some trial and error to find the best fit for you.
  • lemint
    lemint Member Posts: 76
    edited August 2016

    Thanks for all the advice. I'm see how I feel after going off the anastrozole for a couple weeks. On a brighter note my mammogram came back normal. Yeah!!!!

  • Molly50
    Molly50 Member Posts: 3,008
    edited August 2016

    Lemint, congratulations on the clean mammo!

  • NisaVilla
    NisaVilla Member Posts: 505
    edited August 2016
    Lemint - Yay! I wish you many more clean mammon.

    The following is a cut-n-paste post from the Arimidex thread. "AstraZeneca has an "Arimidex Direct" program that costs $30 for a month or $90 for 3 month supply, and they ship it directly to you. It is the brand name Arimidex. Google Arimidex Direct and the link to the page is there. Your doctor sends them the prescription, and they auto-refill, so you never have to worry about running out."

    It is not insurance or income related, it is available to all, and it is just as it reads. I started using this service and how nice to get it in the mail. It is exactly the same as what I used to get from CVS: name brand Arimidex from the UK at a small fraction of the ridiculous insurance price. All legit, I highly recommend.

    Hugs, Nisa
  • NisaVilla
    NisaVilla Member Posts: 505
    edited August 2016
    This is a comment on DEXA bone scan - I can't remember who posted on this several weeks ago, and I am feeling too lazy to check past posts, but I wanted to share the good news that the NON-insurance cost (cash) is $75. My first Prolia shot was delayed due to something off in my blood work and I wanted to have a new baseline. I called the imaging place out of curiosity (and thinking my insurance would deny payment because I had my last Dexa less than a year ago) and couldn't believe it is $75. I am always critical of healthcare costs in the US compared to the rest of the first world, but this is good news. Hope this info helps.
  • Jul1970
    Jul1970 Member Posts: 9
    edited September 2016

    Hello, my name is Julia. I'm 46 and live in Georgia. My signature line below has all the details about my cancer. I had a double mastectomy without reconstruction on July 21 (I'm happy flat while wearing breast forms, currently). I didn't need chemo or radiation. My oncologist and breast surgeon (two wonderful women) want me to take Tamoxifen, and though I filled the prescription, I just cannot make myself take it. Fear of side effects is the main cause, but I'm also not convinced the 5-7% it will benefit me warrants the cost or effects from long-term use.

    I am currently losing sleep over whether or not to take Tamoxifen. I may get a second opinion to help make the decision.

    I look forward to getting to know you wonderful ladies!

  • ruthbru
    ruthbru Member Posts: 47,586
    edited September 2016

    Hi Jul, give it a try, you can always quit if you have a bad reaction. Most people DON'T have terrible side effects from taking anti-hormonals. It's just that (quite naturally) the ladies who have problems are the ones talking about it. The others are just out living their lives. (I did 5 years of Arimidex with little problem.)

  • octogirl
    octogirl Member Posts: 2,434
    edited September 2016

    I agree with Ruth. I did have some problems with the first anti-hormonal they put me on, but they then switched me to another (after having me take a nice break to be reasonably sure it was the pills) and since then my SEs have been minimal.

    Welcome to the thread!

    Octogirl

  • NisaVilla
    NisaVilla Member Posts: 505
    edited September 2016
    Hi Julia. Welcome! As others have said, most women have mild o no SEs on these drugs. You can always change your mind, switch or stop altogether. I do experience some side effects but are tolerable, and every morning as I take my Arimidex I give thanks to researchers responsible for this very useful drug that can keep cancer at bay. Is your fear of side effects bigger than your fear of recurrence? Maybe more chats with your MO will help with the fears? Good luck with your decision, I hope you decide to take hormonals. Hugs, Nisa
  • hopeful82014
    hopeful82014 Member Posts: 887
    edited September 2016
    Welcome, Julia. I agree with the others; please DO give tamox a try - an honest try, not just a week or two. Second opinion, too, can be very helpful.

    I did about 18-20 months on my first A/I without any major side effects. I've since switched to another and am doing fine with it. These drugs are powerful tools and, while I wish there were a better option, I am grateful to have them.

    Good luck- And expect the best!
  • daisy777
    daisy777 Member Posts: 11
    edited September 2016

    Hi Everyone, haven't posted much, but I'm Lisa, 48 yrs old married with an 8 year old. Although improving slowly, I still feeling weak & "hung over" from surgery 25 days ago,,,is this normal? It's tough to feel good emotionally when physically so weak & tired. Waiting for CT scan next Friday, while still agonizing over those positive nodes. Fretting they will find more cancer as I have all these aches and pains in my body. Thinking of chemo scares me, as I saw my Mom go through it for lung cancer. I know, completely different. This site is deeply helpful, and heartbreaking all at the same time….so glad to be here.

  • Jul1970
    Jul1970 Member Posts: 9
    edited September 2016

    Thank you, ladies, for the warm welcome and Tamoxifen advice.

    On Sept. 27 I have an ultrasound at my gynecologist's office next door to the hospital. I've decided to try Tamoxifen that morning so if there are serious SEs I'll be at the medical office. I realize some SEs won't show until the drug builds up in my body, but somehow the idea of being in a medical environment when I first take it is comforting.

    I'm not usually this terrified about taking medication, lol!

    Again, thank you so much for your encouragement and advice. ~ Julia


  • NisaVilla
    NisaVilla Member Posts: 505
    edited September 2016
    Hi Daisy - Welcome! The list of things we all feel after BMX is endless and makes your symptoms normal given the context. However, please don't guess or dismiss symptoms. Do whatever it takes to reach peace of mind. What helped me was a having a clear path/treatment plan and second opinions from unrelated providers. We are here for you. I am sorry about your Mom🙏🏼
    Julia - Good idea to start Tamoxifen treatment in a place that makes you feel safe. Whatever it takes to get through BC is what we do! Come back and tell us how it is going.

    Hugs to all, Nisa 🌷
  • Molly50
    Molly50 Member Posts: 3,008
    edited September 2016

    Welcome Daisy and Julia. Daisy, what surgery did you have?

  • ruthbru
    ruthbru Member Posts: 47,586
    edited September 2016

    Hi Lisa, just take one step at a time (easier to say than do, I know!). It is totally normal to feel blah after surgery. You really aren't very far out & I know that the after effects on the anesthesia alone can take a long time to get out of your system.

    Julia, glad you are going to try the pills. One of my good friends, who started about 6 months before me, gave me the good advice of 'keep moving'. Movement/exercise will definitely help with any side effects, plus make you feel better overall both physically and mentally. I didn't have any dreadful SEs, but I would say it took about 6 months of settling in when I started before I felt pretty much 'normal'.

  • daisy777
    daisy777 Member Posts: 11
    edited September 2016

    Hi Nisa & Molly, it was a lumpectomy I had and SNB, I guess I thought I'd feel better than this by now.

    Ruth, yes I have heard the effects of the anesthesia can last a quite a long time, patience I guess. : )

    I also found another lump in my other breast the nurse checked the day before surgery and told me she wasn't worried about it, but now I have some pain in that arm pit and towards nipple along with some itching…better have that checked...fingers crossed.

  • Molly50
    Molly50 Member Posts: 3,008
    edited September 2016

    Daisy the snb can cause discomfort for a long time and nerves regeneration can be painful at times. Did you have an MRI? I would definitely get the other breast checked out. I am praying it's nothing.

  • daisy777
    daisy777 Member Posts: 11
    edited September 2016

    Hi Molly, the snb site I understand will take a while, it's the all over weak, shaky feelings I still get...it is getting better, but I guess I just didn't expect that. I will be calling tomorrow to have other breast checked. I pray it's nothing too.

  • ruthbru
    ruthbru Member Posts: 47,586
    edited September 2016

    Let us know what you find out.

  • U4iachic
    U4iachic Member Posts: 50
    edited October 2016

    It's been a while, I'm just seeking some support. I have a lot of scar tissue on my radiated side but this morning I think I found a roundish swollen node, close to the arm pit area. Now I'm freaking out. I had that area checked about 6 months ago due to all of the scar tissue but this just sent me over an emotional edge. I called my breast surgeon who is going to see me Tuesday, she's in surgery on Monday.....I feel lost and didn't know where to post, I feel like I have a bullseye on my back since it was in my nodes. I'm coming up on 2 years and I just am sick with this worry. Any advice or anyone experience anything like this?

    Thanks for listening.

  • ruthbru
    ruthbru Member Posts: 47,586
    edited October 2016

    It is easy to say not to jump to conclusions, but VERY hard not too!!! I am thinking that since you've had a lot of issues with scar tissue, it would make sense that it would be related to nerves trying to grow back together etc. (but of course that is totally a guess on my part). Try to do as many distracting things as possible this weekend.....things where I have to MOVE (exercise, cleaning the house/garage/yard work etc.) is what helps me the most when I'm really nervous and upset about something (also sleeping pills, which I take on those occasions too so that I can be knocked unconscious for awhile). Hang in there and let us know what you find out!

  • U4iachic
    U4iachic Member Posts: 50
    edited October 2016

    Thank you so much! I will let you all know what she sees. I do know she will do an ultrasound in office. Thank you for responding, I've already decided to use my valium to get myself under control tonight!

  • ruthbru
    ruthbru Member Posts: 47,586
    edited October 2016

    Good.....just get yourself to Tuesday!

  • hopeful82014
    hopeful82014 Member Posts: 887
    edited October 2016

    Daisy - Hi; I missed your posts earlier but want to welcome you. I'm sorry about your mom - I lost mine to the same cancer and know how painful that is to go through. I understand , too, how jumpy those +nodes can make you feel; you're not alone.

    Everyone recovers from surgery at their own pace. I was back (walking) on my treadmill the next day but it was a while before I felt really strong again. As everyone's said, I hope the other side is nothing and am glad you're reaching out to have it checked. In the meantime, deep breaths and distractions can help. Hang in there and update us when you know what's going on, o.k.?

    U4iachic - My radiated, fibrotic tumor bed sends me to the dark place from time to time, also. It's really hard to tell what's an area of concern and what is scar tissue, etc., after radiation. In fact, my PT referred me back to my RO this week, just to be sure... I think in the first few years after surgery & radiation there are a lot of changes taking place in the tissues and it can drive one crazy, especially with +nodes. I'm crossing my fingers that the lump you've found is benign but I know that for you Tuesday can't come soon enough. I'm sending lots of good energy in your direction; hang in there. (PS - your description of "a bullseye on my back" is exactly on point. Thank you.)

  • U4iachic
    U4iachic Member Posts: 50
    edited October 2016

    Thank you! I appreciate everyones input, it's so helpful.

  • mommado
    mommado Member Posts: 48
    edited October 2016

    Hi ladies, I know I've been away from the board for awhile, but Need to vent a bit and see if I'm alone. I was diagnosed stage 2 invasive ductal in 2011. I had lumpectomy and radiation and was saved from having chemo. Thought that would be it but I was on tamoxifen until April went off because of joint pain and feeling like crap. I was doing great, feeling wonderful, happy, not much pain but onco wants me on meds so I started lupron shots. Had second one Friday and feel like I did on tamoxifen. Started ameritrex yesterday. I'm so done. I thought after radiation and surgery I'd have my life back but it's been horrible. I've gained at least 40lbs and don't recognize my body, I'm in constant pain with joints and muscles. Headaches have now started since the shot and I constantly feel sick. When do I get my life back? I'm only stage 2, I didn't need chemo everyone says I'm so lucky but I don't feel that way. I'm so sick of being sick and tired :(

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