December 2011 Surgeries - want to wait together?

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  • Moonflwr912
    Moonflwr912 Member Posts: 6,856
    edited February 2012

    Oh,Gabe, NO! That sucks. I lost my te, I hope your infection heals fast. I had a drain after as well, that really sucks too. But maybe it will hbelp you heal too. Good luck. Spunky, I hoped they figure ir out for you. Bogie, dang insurance! Blessings and Ginger, is there any other way to take pills? You mean you dont have take tbhem all in one big swallow? LOL have a great nite everyone!

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  • QuinnCat
    QuinnCat Member Posts: 3,456
    edited February 2012

    Got Onco score today--39--just blech. Chemo starting in 3 weeks. Every 2 weeks for 16 weeks...friend wrote them down and not sure, exactly, what they are. Does it matter? After 16 weeks, a weekly dose of cisplatin just because I'm brca. Add to that, the ONC is 85 miles away. That's fourteen doses of chemo. Drains out today and some fills. I'm feeling genetically defective today.

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  • Ginger48
    Ginger48 Member Posts: 1,978
    edited February 2012

    Kam- I am so sorry to hear your news; that just s**cks! You will find lots of support on these boards to help you make it through.Glad you got the drains out! Sending hugs from your genetically defective brca sister...

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  • spunkyboobster
    spunkyboobster Member Posts: 738
    edited February 2012

    Ginger48-Thanks for the info, everything helps. Tamox has a whole set of SEs different than AI, including strokes, blood clots and depression-just to name a few.

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  • CookieMonster
    CookieMonster Member Posts: 1,035
    edited February 2012

    Oh Karol, so sorry to hear your news. You CAN do this and use the boards for support as you go through the next round. HUGS! And lots of positive thoughts and vibes coming your way.

    -Judy

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  • goldlining
    goldlining Member Posts: 1,178
    edited February 2012
    Hang in there Kam170. Sorry for that development. Hugs! We are here to listen.
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  • chrissilini
    chrissilini Member Posts: 313
    edited February 2012

    Kam..that just rots. Prayers and hugs to you. Gabe... sorry about your setback. Take it easy and you'll be back on the road to recovery in no time. Spunky...did your onc say you definitely had to do HT and why? My mo said for me the risks of HT were higher than any benefit they would provide. I'm not doing any.

    Best wishes to all.

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  • spunkyboobster
    spunkyboobster Member Posts: 738
    edited February 2012

    Kam-positive thoughts and energy being sent your way.

    Chrisssilini-I asked my onc if I had to do HT and she said yes because my oncotype scores were 16 and 17.  I'm not convinced, however. If you don't mind me asking did you do chemo and if you had oncotype test what were your scores?  I really need a second opinion, but not sure where to start looking for another onc. It's already been two months since my surgery, not sure how long you can wait to start HT.

    Have a restful weekend everyone!

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  • CookieMonster
    CookieMonster Member Posts: 1,035
    edited February 2012
    spunkyboobster - My MO says that the HT is a marathon not a sprint, so waiting to start is OK. I'm 8 weeks past and haven't started yet. I wanted to be mostly healed from surgery so that SEs were known to be from the Tamox and NOT from my recovery.
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  • QuinnCat
    QuinnCat Member Posts: 3,456
    edited February 2012

    Thanks everyone...on the bright side, the fills I got yesterday don't bother me at all and I had an awesome PT appointment this morning. I love my new much smaller breast mounds and am enjoying going braless!! No infections or complications this far, unless you call a lack of sleep a casualty.



    Moonflwr-you've had it so tough. I was reading your posts last night. I'm sorry I haven't been able to keep up with everyone here...I think I have chemobrain, pre-chemobrain.



    Spunky- I thought all ER+ or PR+ had HT. I think the Oncotype scores you get assume HT which would in turn make me assume that therapy was a given for hormone positive women?

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  • goldlining
    goldlining Member Posts: 1,178
    edited February 2012
    Thanks to the LE massage video Kam170 posted a while back, I have booked in to see the LE physio at that clinic. Lindsay is on mat leave but her associate will see me. The PS clinical nurse isn't worried about it in terms of infection or failure, based on my description. I'm travelling next week so the appointment is week after. Hooray for small bursts of concentration for making appointments!
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  • chrissilini
    chrissilini Member Posts: 313
    edited February 2012

    spunky...I don't think they even did an oncotype and I didn't do chemo. They felt that with a bmx, no node involvement and no vascular involvement that I'm really not at any more risk than anyone else. I've been debating about a second opinion but not sure what I would do if they told me I should be on HT. I don't know if I'm willing to deal with the potential side effects if it woudn't benefit me greater than a few %.

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  • Bogie
    Bogie Member Posts: 286
    edited February 2012

    Kam, you have our full support during your trials. Vent, cry, swear when you need to and put yourself first now. it's about you and do what you need to get through it.



    On another note, My wound is still open and slow healing. To date I have been unable to have any fills until it closes up. Ironically, it has closed a little more in the last few weeks so I was able to get both breasts filled for the first time today. Although one side looked deflated and the other side has grown into a large hard baseball!



    My PS told me its a hard shell of scar tissue that has formed around my expander and if it doesn't break down after this first fill, another surgery will need to be done....sigh. Any one else experience this??

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  • faithhopenluv
    faithhopenluv Member Posts: 323
    edited February 2012

    Bogie - one of the nurses in my MOs office said in a pinch they could draw blood from my 'bad' arm, the biggest risk is the blood pressure cuff. I'm definitely not offering that arm to any treatment, but has anyone heard the same?

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  • Bogie
    Bogie Member Posts: 286
    edited February 2012

    Hi Faith,

    I have never heard that in a pinch it's ok to get blood drawn on the arm where lymph nodes were removed. I am fighting them now not allowing them to do BP, and blood draws from my MX arm where lymph nodes were not removed. You are still at risk according to one of my doctors. The other said it was fine.

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  • Bogie
    Bogie Member Posts: 286
    edited February 2012

    Chrisilini,



    The Oncotype score determines if you need chemo. That score, especially if low is under the assumption you will be receiving Hormonal Therapy 5 year drug. This is what both my Oncologist and Breast Surgeon told me. When I asked what would happen if I refused it for any reason? If you are ER/PR positive I was told its more than a few % benefit. I was told 50% to be exact. You may want to seek a second opinion on that one. We seem to have the same diagnosois, I also had a bilateral MX but once it's determined invasive there should be no question. Even when it was just DCIS, my original diagnosis the plan was to go on Tamoxifen, Radiation with a lumpectomy. I had a score of 7 on the Oncotype and will be starting Arimidex next week, no chemo. Am I looking forward to it...heck NO! I hate the sound of all the side effects, but if I have a reoccurrence I will know I did what I needed to block those receptors feeding into the growth of developing new cancer cells. It's a personal choice, I even sought a second opinion on treatment and both Medical Oncologist agreed to do the antihormonal drugs, so I will and only pray I can tolerate the side effects.



    I hope this sheds some light on another view from another sister :). It's always such a tough decision to be given choices. Knowledge is power...

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  • QuinnCat
    QuinnCat Member Posts: 3,456
    edited February 2012

    I concur Bogie - Other than my cancer being 1.1 cm instead of < 1 cm, Chrissilini and I have the same tumor characteristics.  It is my understanding, that Oncotype scoring, atleast in the United States, is a standard order for node-negative, Stage 1 and 2, ER+ IDC < 2 cm.  Basically, it lets some people off the hook for chemo, but the prognostications all assume HT (horomone therapy).

    There was never any discussion about doing or not doing HT with either my BS or MO.  Also, HT, while taken for 5 years "gives it's benefit for a lifetime" per my BS.  Whatever that means, but it sure sounds good! 

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  • Blessings2011
    Blessings2011 Member Posts: 4,276
    edited February 2012

    I posted here a while back about having my doubts about taking the Arimidex, and when I emailed my MO my concerns, she told me to come back in and we'd talk.

    So I saw her yesterday, and oh, what a good meeting! I told her that at our first meeting, I felt like all she had done was throw statistics at me, and that my questions weren't answered. I  then went on to say that I understood that stats were what she did - that her goal was to reduce the risk of any recurrence in her cancer patients. I also said I hadn't asked the right questions so she could give me the right answers.

    I told her that it wasn't that I was afraid of GETTING side effects from the Arimidex; it was that I already HAVE many of the side effects...and what would adding this drug do to my QOL?

    She was very patient and listened well. Bottom line - I told her I would try the Arimidex and we would discuss side effects. Based on how bad they were, I could try another drug, or she would just tell me that the risk was not worth the benefit, and to stop taking the drug.

    I think that's what worried me the most.....that to her, QOL would not factor into the big picture, when it really does. She said that taking the Arimidex would lower my current 1% - 2% risk of recurrence another 20% - 40%, as close to zero as possible.

    I'm so glad we understand each other.
     

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  • Blessings2011
    Blessings2011 Member Posts: 4,276
    edited February 2012

    Oh, yeah - here's the other part of the story....

    I think I posted here about signing up for the Kaiser Weight Management Program in order to lose 40 pounds by June...well, after I announced to the entire world that I was going to do this, the doubts crept in. People started telling me how harsh that would be on my body, especially after major surgery. I started to doubt my ability to stay on the program for the entire four months of meal replacements.

    I decided to pray really hard, and to get out of God's way. I knew He had a plan for me, but I sure was trying to control everything by doing research, listing pros and cons, and having a gazillion appointments with other medical professionals at Kaiser.

    So I just asked for a sign...something that I could take for certain that I was on the right path.

    I asked my PS if I were healthy enough to go on a 960 calorie diet. He said yes.

    I had all my labwork done and it was all normal.

    I spoke to a Health Educator who told me that exercise was 60% of the program, and that I could do it myself if I followed a 1200 calorie-a-day plan in conjunction with one of the Registered Dieticians. She said all I needed to do was get an hour of aerobic activity per day. (Yeah, right, with all my other medical issues...)

    I had an EKG done that showed PROBABLE LEFT AORTIC ABNORMALITY. Turns out the EKG tech knew nothing about TEs, and that they would cause an abnormal EKG reading. (Learned that after-the-fact from my PS)

    I saw the Weight Management doctor who was pleased I wanted to join the program, but was very worried that the very low calorie diet would affect my healing, especially since I was looking at a June exchange date. She referred me to the MO for approval.

    Amazingly, the MO was THRILLED that I was going to go through the program. She said that no, I could not have any surgery during the meal replacement phase, but during transition, where food was reintroduced, I would be fine at about three weeks in.

    In her opinion, losing 40-50 pounds right now would be the absolute best thing I could do for my overall health (cholesterol, blood sugar, blood pressure, excess body fat) AND the best thing I could do for my breast cancer. In fact, she wants me to delay taking the Arimidex until AFTER the four-month meal replacement phase, so that whatever side effects I might get from the diet would not be confused with the side effects from the AI.

    SO - I took that as my sign. The next "cohort: doesn't start til March 15th, so I will sort of be in training to lower my food intake and up my water intake in the meantime.

    And finally, I realize that it's not a race to get my exchange. I would dearly love to have my squishies before summer, but the original date would have been in August anyway, had I not gotten some unexpected fills. So I will bide my time, follow the directions, and let the docs tell me when I'm healthy enough for my exchange.

    So thanks to all of you who have been telling me the same thing here!!!!



     

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  • Bogie
    Bogie Member Posts: 286
    edited February 2012

    Has anyone developed Capsular Contraction with your expanders?





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  • spunkyboobster
    spunkyboobster Member Posts: 738
    edited February 2012

    Good luck Blessings-sounds like you're on the right track.

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  • chrissilini
    chrissilini Member Posts: 313
    edited February 2012

    I understand completely what everyone has said and I appreciate the input. My MO said my risk of recurrence was about 1-2%. Tamox could reduce that but for a 1/4% the risks wouldn't be worth it. I have to agree. It's a personal decision that I have to live with and I'm finally ok with it. I will do everything else in my power to help myself and be done with this nastynes.



    Hope all are doing well.

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  • Blessings2011
    Blessings2011 Member Posts: 4,276
    edited February 2012

    Bogie - no capsular contraction with TEs.....that I know of!!!

    Thanks, spunkyboobster!

    Chrissilini - a lot of energy went into your decision. Sending you big hugs for what you went through to get there. I may be in the same place one of these days. Peace to you.....

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  • fitzdc
    fitzdc Member Posts: 1,467
    edited February 2012

    Back from second meeting with MO.  Ran  blood tests to see if my past issues with blood clotting were related to past surgery or to blood issues.  After 22 vials of blood he should find out everything about my blood!  No decision yet on HT until after blood is analyzed - so another week or so to read all I can on Tamox and AIs.

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  • CarolAnn6
    CarolAnn6 Member Posts: 44
    edited February 2012

    Happy Valentines Day.



    Yesterday, I went to my first Yoga/Meditation class and I cried for most of the class. The instructor was so caring and wonderful and I felt so safe that all the saddness and fear just came pouring out. I did not even know I had that much in me.



    I wish you all a Happy Valentines Day.

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  • chrissilini
    chrissilini Member Posts: 313
    edited March 2012

    Happy Valentine's Day! Hope all are healing and recovering well.

    I need to vent a bit. I have my date for my exchange surgery! Yay. March 15th. Can't wait to get these te's out of me and hopefully be more comfortable and be able to put this bc stuff a little further behind me. I filled out the paperwork for my job and when my boss saw it he asked if I could change the date! He said it wasn't a good time, someone had asked for that week off for vacation. Asked if maybe I could push it back a few weeks. Really? I was completely shocked, p'd and hurt. Like this is a vacation for me. I'm not a very confrontational person. I wish I was to a certain extent. I would like to tell him just how insensitive he was. How would he feel if it was his wife that had been treated that way?

    Maybe I'm overreacting. Maybe I don't understand because I'm not a supervisor. I'd like to believe I have a bit more compassion than that. I can't afford to lose my job so if it comes down to it I'll have to change the date. I'm still at a  loss for words about the whole thing.WTF?

    Thanks for listening.

    Christine

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  • goldlining
    goldlining Member Posts: 1,178
    edited February 2012

    chrissilini I completely get the feeling. I have had mgt and admin people all treating this whole thing as me going to the spa. I made recommendations about arranging for covering my work in a way that would minimize the impact on students. That backfired when the surgeon delayed my OR date. Then HR started talking like I was taking advantage. I should have just kept it all under my hat and disapeared the day before surgery and said "see ya", screw the students. There was more delay in my case when the surgeon's check-up to decide return to work was also postponed, resulting in more time off for me. Both cases, I just said "I'm stuck in the middle because this has to be done, and I feel badly that the timing is so poor, but I made your case to the doctors and this is the best date I could negotiate." They backed off but I keep getting overtones of taking advantage in the official communications. The lingering bitterness I've developed as a result of that makes me perceive them as insincere when they ask how I am doing, even when it might be coming from a good place. So, yeah, I completely hear how you feel.

    Job security repercussions should be so not on. Not to say there aren't bad companies, but right is on your side.

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  • Bogie
    Bogie Member Posts: 286
    edited February 2012

    Yep, I cry to when people are so nice to me.



    Saline vs Silicone".................



    I'm interested in hearing what you have chosen and why?

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  • Ginger48
    Ginger48 Member Posts: 1,978
    edited February 2012

    Chrissillini- I would just tell them that this is when it works for the surgeon and they feel it is the best time for you to do it. Sometimes you just have to take care of yourself.

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  • Blessings2011
    Blessings2011 Member Posts: 4,276
    edited February 2012

    fitzdc - 22 vials? Yikes! Your poor arm!!! I got a mini-reprieve from the Arimidex - my MO doesn't want me to start it until I'm done with the four-month meal-replacement phase of my weight loss program. Woot! Hope you get some definitive answers!

    CarolAnn6 - I once heard this quote: Warm tears are a sign that a heart that has been frozen by pain is beginning to melt. Sounds like you found warmth and comfort at your yoga class.

    chrissilini - Your boss is an insensitive butthead. Well, maybe not, maybe he's just ignorant, but still......if I were there, you could hold him down and I'd whack him for you. If you were getting a boob job because you wanted to be more glamorous, you might have had some flexibility in scheduling your surgery. But this is all part of your - HELLOOOOO! -  breast cancer treatment, and as such, is very important and medically necessary. Empathetic GRRRRRRs!!!!

    goldlining - I completely get the dedication to your students. There were many times that I did counseling sessions from home when I was sick as a dog, because I knew they needed to talk to me ASAP, and sometimes going to see another counselor meant they would have to start at square one. But I finally realized that my health came first - no matter what. HR and I had a few go-rounds with surgery dates I had scheduled (before BC) and yes - you need to know how to word things so they get it and understand that you mean it.

    HAPPY VALENTINE'S DAY TO ALL MY DECEMBER SISTERS!

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