Starting Chemo April 2009

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  • Titan
    Titan Member Posts: 2,956
    edited September 2012

    Wow...lots going on around here! 

    Happy Birthday a little late Amy...even though you are freaking right now...try to have a little fun..ok?  My birthday is today!  I'm almost as old as you are...53...! 

    I hear you on the medical stuff....I dread the thought of any medical procedure at all...I was supposed to have a tooth pulled on October 1st....and I cancelled it...the tooth is way back in the back of my mouth and there is no reason to go through this....

    I can shop at Walmart now and fit in

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  • Titan
    Titan Member Posts: 2,956
    edited September 2012

    Wow...lots going on around here! 

    Happy Birthday a little late Amy...even though you are freaking right now...try to have a little fun..ok?  My birthday is today!  I'm almost as old as you are...53...! 

    I hear you on the medical stuff....I dread the thought of any medical procedure at all...I was supposed to have a tooth pulled on October 1st....and I cancelled it...the tooth is way back in the back of my mouth and there is no reason to go through this....

    I can shop at Walmart now and fit in

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  • Titan
    Titan Member Posts: 2,956
    edited September 2012

    Wow...lots going on around here! 

    Happy Birthday a little late Amy...even though you are freaking right now...try to have a little fun..ok?  My birthday is today!  I'm almost as old as you are...53...! 

    I hear you on the medical stuff....I dread the thought of any medical procedure at all...I was supposed to have a tooth pulled on October 1st....and I cancelled it...the tooth is way back in the back of my mouth and there is no reason to go through this....

    I can shop at Walmart now and fit in

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  • Titan
    Titan Member Posts: 2,956
    edited September 2012

    Wow...lots going on around here! 

    Happy Birthday a little late Amy...even though you are freaking right now...try to have a little fun..ok?  My birthday is today!  I'm almost as old as you are...53...! 

    I hear you on the medical stuff....I dread the thought of any medical procedure at all...I was supposed to have a tooth pulled on October 1st....and I cancelled it...the tooth is way back in the back of my mouth and there is no reason to go through this....

    I can shop at Walmart now and fit in

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  • hrf
    hrf Member Posts: 3,225
    edited September 2012

    Amy, thinking of you. Regardless of what this is, it is NOT mets and that is the worst. It's no fun worrying and waiting for test results but remember, whatever it is, it is treatable. Sending lots of hugs.

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  • Titan
    Titan Member Posts: 2,956
    edited September 2012

    Very true Helen....

    Amy..check with Betsy about this stuff...she went through something very similar

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  • JudyNaomi
    JudyNaomi Member Posts: 1,413
    edited September 2012

    Amy, hope you are doing ok today. I am thinking about you.

    Geri, how are you feeling? Titan, Happy Birthday to you! Hope you are doing something fun for your special day!

    Sending everyone (((hugs))) for a good weekend!

    Judy x

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  • AmyIsStrong
    AmyIsStrong Member Posts: 1,755
    edited September 2012

    Doing mostly ok today. Figuring I won't hear from the doc till Monday earliest, so I am not on pins/needles waiting for the phone. Will keep you posted and will try to have a good weekend. 

    Thanks on the suggestions about Betsy, Titan. I will email her.

    Amy 

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  • inthemoment
    inthemoment Member Posts: 538
    edited September 2012

    Oh my, gone for a few days and so much happening.  Amy, going back a few days to one of your posts, and Judy's comments on it...everyone of us goes through our cycle of anxiety, fear and, hopefully, relief when we face a medical crisis.  There is no one event that is more significant than the next, because when it is you, the world stops for a brief time while you slowly exhale and face whatever it is. 

    That is why all of us cherish what this room gives us; permission to be scared, to vent, to get ready to face whatever challenge there is and grab onto one another (virtually, of course), until we can stand on our own.  I don't doubt for one minute that you are an exceptionally strong, independent woman who I am sure is the "go to" person for everyone else - well, here, we take turns.  And right now it is your turn to be held up by your friends until you feel your strength return.  We will all pray for good results and will stand with you as you do for any of us.

    When we go through things like this, I often think of Lena, and how it ws so difficult for her to let us support her, but when she did we all were there for her and Ratpack.  Let me be there for you, as you have for me.

    Wishing you a peaceful weekend and good news on Monday.

    Geri

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  • hrf
    hrf Member Posts: 3,225
    edited September 2012

    Geri, beautifully said. I agree completely. 

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  • AmyIsStrong
    AmyIsStrong Member Posts: 1,755
    edited September 2012

    @ Geri - you wrote: well, here, we take turns. And right now it is your turn to be held up by your friends until you feel your strength return

    Yes this is so true. And I am so incredibly grateful.

    Doing ok, mostly. No word from doc - figuring maybe Mon or Tues.

    Will let you know.

    Thank you again. Amy 

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  • Titan
    Titan Member Posts: 2,956
    edited September 2012

    Thanks for the Birthday wishes!!!  Heck...I'm getting freaking old

    I miss Lena so much...

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  • JudyNaomi
    JudyNaomi Member Posts: 1,413
    edited September 2012

    Geri, what you wrote was perfect and really said it all - it brought tears to my eyes and I think it speaks for all of us. I hope you are ok too - there is plenty of love and support to go around here. I miss Lena too and I think that even though she found it difficult to let us support her at times; on some level I know that we were a great support to her in as much as we could be from such a distance.

    Amy, draw as much strength and support as you need from us, we are all here for you. Hoping for good news from the doc.

    Sending you all hugs for a good Sunday! Judy x

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  • Lesleyanne67
    Lesleyanne67 Member Posts: 225
    edited September 2012

    Geri



    I don't know what else to say that everyone else hasn't already said. Eloquently written.



    Hang in there Amy!!



    Happy b-day Titan.



    Ughhh on missing Lena. Did anyone ever get to talk to her rat pack after she passed? I know she did not want anything done and said she would just go away....I understand her feelings but much of that is not about the person who is dying but the people left behind that loved that person. Even if she really wanted everyone to forget her and move on that can be easier said than done....



    Gentle hugs to all of you! Hope we have a great week and Amy fingers and toes crossed for good news!



    Lesley

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  • Titan
    Titan Member Posts: 2,956
    edited September 2012

    Lesley...I don't think any of us knew her real name...I have to admit that I searched the internet for her but with little info. to go on I couldn't turn up a thing...I think that is what she wanted though....but it still is hard because none of us really know what happened

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  • AmyIsStrong
    AmyIsStrong Member Posts: 1,755
    edited October 2012

    I searched also, looked at obits in the area she lived, even contacted a Mod that I know on BCO and asked if they had any personal contact info on her from when she signed up (they didn't). The open-ended element of it has been hard on all of us. I  am sure in her own mind she was doing the best thing - I know she loved us and wouldn't have deliberately hurt us. But it has reinforced to me the truth of what Lesley said about the people left behind.

     Had a good weekend. But today I am definitely on edge and waiting for the phone to ring. If no word by tomorrow afternoon, I will call them.

    Have been doing a lot of thinking about the idea of a hysterectomy though. Rather than a bunch of testing which quite possibly might lead to it anyway, there is something to be said for just getting it done - scheduling it in my time, when I am ready, at my convenience, etc, and feeling more in control of it, sort of like when we shaved our heads before all the hair fell out on its own.  Not sure about this yet - just thinking.   And I wrote Betsy an email (outside of BCO) and have not heard back yet. Maybe she is traveling.

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  • hrf
    hrf Member Posts: 3,225
    edited October 2012

    Hi Amy. It's good to think and get your head around some issues. In the meantime, I'm still thinking about you and wishing for the best possible news.

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  • AmyIsStrong
    AmyIsStrong Member Posts: 1,755
    edited October 2012
    Doctor just called. As I thought, the uterine lining is thickened, which may or may not indicate malignant cells (most likely not). They want to do a D&C and see what's in there. I was thinking about going straight to the hysterectomy. We talked a long long time. She was super helpful. Now I need to think this through.
    If I want the hysterectomy, I have to consult with a gyn onc first.
    If I do the D&C, I will go off the Tamoxifen (which causes the uterine thickening) and onto an AI that doesn't cause it.

    Still have to get quiet and figure things out. Talked to my mom and kids who were supportive. 

    So choices are:  D&C next week, biopsy of tissue. IF not fine, do hysterectomy now.  IF fine, drop Tamox, go onto AI. U/S every six months. And IF lining thickens again, THEN I do the hyster.

    OR schedule hysterectomy for 4-6 weeks.  They do a sampling of the tissue when you are under anesth, and if it is malignant, they have a special gyno/onc waiting in the wings who steps in and does a lymp node removal. Just like the SNB we had with our breast surgeries. I had no idea they did that. But she said that it is a VERY small chance there is uterine cancer, and an even SMALLER chance it would have spread beyond the uterus. So I'm not going to worry about that.

    What I want to avoid is this over-and-over again bleeding/D&C cycle that ends up in a hyster ANYWAY. i'd rather just get it done now. But on the other hand, maybe if I do the D&C this once, and go off tamox, maybe it will not recur and I could skip having the major surgery.


    So that's where I am now - feeling MUCH calmer. I guess in the back of my mind I fearedthat they were going to say they found some enormous tumor in there and I had 3 months to live. But they didn't. So I can deal with this.

    Your thoughts? (And thanks a million times over for being there for me.)
    Love

    Amy 

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  • hrf
    hrf Member Posts: 3,225
    edited October 2012

    Amy, I am so relieved that there is no evidence of cancer. I know the situation still needs to be addressed but whew!!!!! Lots of hugs to you. I know you'll get many opinions but here's mine. Since taking drastic measures cannot be undone, my suggestion is to do the D & C first. See what that tells you. Then make a decision. I'm a one step at a time kind of person. At least you are at an age when a hysterectomy isn't going to change your life but why remove everything without having all the info first. Anyway, that is my opinion. However, I will support whatever decision you make. 

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  • Lesleyanne67
    Lesleyanne67 Member Posts: 225
    edited October 2012

    I was BRCA+ and only 41 when diagnosed but chemo threw me in to menopause and I had to have the partial. Still have a uterus but no ovaries no Fallopian tubes...I never got a cycle again and so they never put me on Tamoxifen I went straight to AI. Had a heck of a time with Arimidex so switched to Femara which is more tolerable



    I think the D&C first sounds good BUT if the every 6 month check is stressful and nerve wracking then I say do what will cause you the least anxiety. Stress is not good for you physiologically



    Lesley

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  • inthemoment
    inthemoment Member Posts: 538
    edited October 2012

    Hi Amy,

    I'm glad the preliminary news is good, but none of us likes the idea of the tests, tests and more tests. The hysterectomy is pretty drastic as a first step, but only you know your emotional tolerance for the 6 month routine. Ultimately, you will know, in the quiet of the night, the right answer will come to you, and you will know. And we will all be here for whatever you decide.



    Geri

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  • JudyNaomi
    JudyNaomi Member Posts: 1,413
    edited October 2012

    Amy, good to hear that the news so far is ok and that you can now begin to deal with things one step at a time. I think that maybe the D&C is a good starting point, but I do agree that if you are going to be stressed every 6 months, in addition to the stress we all feel with our regular BC check ups, then it may be a good idea to deal with it all sooner rather than later.

    I agree with Geri, your decision will come to you and you will know what you want to do and we will all be here right behind you, whatever you decide.

    Hugs to you all, Judy x

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  • AmyIsStrong
    AmyIsStrong Member Posts: 1,755
    edited October 2012

    Yes you are all correct so far.  Am going for the D&C next week. Just want to talk to my onc first about switching from Tamox to an AI and get her take. Also am going to ask if I can have a month off between ending the tamox and starting the AI. That way i can see the side effects more clearly.

    I've heard the D&C is no big deal. I am trusting that is so. i am treating it like a colonoscopy (but without the prep, haha) - just a quick, painless in-and-out procedure at the surgi center. That way it doesn't seem scary.

    Thanks for all your feedback on this. 

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  • JudyNaomi
    JudyNaomi Member Posts: 1,413
    edited October 2012

    Amy, sounds like you are thinking things through and making smart choices with each step.

    We are always here, hugs, Judy x

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  • AmyIsStrong
    AmyIsStrong Member Posts: 1,755
    edited October 2012

    Ok now we are rolling. Met with my onc (who I LOVE - I only switched to her a year ago and have only seen her several times but each time I love her more and more, and totally trust her). She was completely on board with the D&C and switching to an AI. Wrote me an Rx for it =- told me to take a month off the tamox, and start the AI in early Nov.

    Am scheduling the D&C today. I can do this.

    Thank you all again SO MUCH. Will stay in touch. 

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  • hrf
    hrf Member Posts: 3,225
    edited October 2012

    Amy so glad to hear you have go forward plan. Just one step at a time and decisions will evolve. Sounds good.   

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  • Lesleyanne67
    Lesleyanne67 Member Posts: 225
    edited October 2012

    Keep us posted Amy. As for AIs unlike Tamox there are 3 choices and j know people have various reactions. Just give yourself 3-6 months to adjust because some side effects lessen greatly or go away.



    On the other hand don't suffer unnecessarily, after taking one for 6 months if you just don't feel right ask for a change. : ).



    Hugs

    Lesley

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  • inthemoment
    inthemoment Member Posts: 538
    edited October 2012

    Hi Amy,



    You sound so much better, and I'm sure it has to do with the confidence you have in your OB-GYN. Let as know when you have the D&C scheduled, and we will all be there with you in spirit.



    Geri

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  • JudyNaomi
    JudyNaomi Member Posts: 1,413
    edited October 2012

    Amy, good to hear that you are feeling better and more confident about this. It is good to have a plan, helps keep things ordered in our minds.

    Keep us posted on the date of the D&C and also on how you are feeling generally.

    Geri, how are you doing? Hope everyone is ok and having a good weekend.

    Hugs to you all, Judy x

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  • inthemoment
    inthemoment Member Posts: 538
    edited October 2012

    Hi all, my brother and sister-in-law are here from North Carolina, and staying with me for 4 days. Today we met up with my other 2 brothers and most of the nieces and nephews...it was a wonderful day. I am so fortunate to have them all in my life!

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