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2013 Sister Warriors

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  • momtotenkids
    momtotenkids Member Posts: 37
    edited February 2013
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    Oh Cuetang I feel for you on the waiting. I hate waiting! Especially on test results. I just posted on the Texas board about being worried about my CT on Monday for abdominal pain. I just want to concentrate on getting better not on worring about what else is wrong!  March would seem like forever to me too. Hope the bonescan comes back OK. Hang in there and vent when ever you need.

    Kimberly-you are in my prayers this morning.

  • PeggySull
    PeggySull Member Posts: 368
    edited February 2013
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    Primary doc non responsive:



    When I was 1st diagnosed on October 31st 2012 after a routine mammogram, I kept sending all of my test results to my primary doc and then to the onc & bs I chose.



    I have been seeing my primary doc for 10 years and she never once called me even though I had a physical with her less than a month before my diagnosis.



    This bothers me. Has anyone else had this experience?

  • emort72
    emort72 Member Posts: 3
    edited February 2013
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    Hi Peggy ...that would bother me also ...I would consider a new primary doc ...not that I believe that they don't sometimes have a hard time not taking their work home with them at times but I believe that there should be a certain level of trust and an established relationship after 10 yrs...I realized I had the wrong one a few yrs ago after I was assaulted and was too embarrassed to tell my primary...not that it was their fault that the level of relationship didn't exist for me to feel comfortable-it may have been mine-but either way I knew I had to find a new one.

  • new2bc
    new2bc Member Posts: 253
    edited February 2013
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    Hi PeggySull,

    I have the same feeling about my gynecologist. He is the one who delivered my son (now 16 years old). After my BMX 3 weeks ago, his office did not even call me to see how I am doing. I also should have switched to another ob/gyn long time ago when I noticed he only takes 30 secs to examine my breasts for a routine exam and then asks me if I had a mammogram recently. I have lost faith in mammograms too which do not show anything if you have dense breasts. When I saw my breasts in the xray, almost 3/4 of it was covered with white lines (dense breasts) and only 1/4 of it could reveal any problem. My breast surgeon told me that these white lines in the xray could be hiding a lot of abnormalities.

  • Cuetang
    Cuetang Member Posts: 173
    edited February 2013
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    momtotenkids -- good luck on your CT!  before BC, we probably wouldn't have given our ailments too much thought.  Wishing good test/scan results!  It's a seriously case of "scanxiety", hopefully we will breathe a sigh of relief and move on in our treatment path. 

    Peggy -- I went to see my primary doc (who I really like, but I've only seen her for minor ailments in the past 2 years) after I had been diagnosed.  I quickly realized that she really did not know much about breast cancer or really what to do.  I don't send any of my test results to her as a result of that.  However, she did send me two emails just seeing how I was doing.  It'll serious judgment call for you, but in my case, I don't really expect anything from my primary doc just because she's not well versed on the breast cancer front.

  • momtotenkids
    momtotenkids Member Posts: 37
    edited February 2013
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    My primary (family) practice Doctor is the one who called me with the results. She showed appropriate emotion and told me to call her for anything I needed. I called her to get a prescription for Xanax and she asked me to come in and talk to her although she did go ahead and call in the Rx. When she walked into the room she opened her arms and gave me a big hug. We sat and talked for about 30-40 minutes. She wants to be very involved in my treatment. She asks that everytime any tests, plans are made that she is included. She also told me that it was OK to grieve the person I was but to make sure I embrace the person I am becoming. I am not a deeply religious person but she asked to pray with me which we did. I left the office feeling like she cared. BTW she has been my Doctor for less than 6 months. I like her and I feel like she really cares. 

  • TMM60
    TMM60 Member Posts: 121
    edited February 2013
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    Good evening my sisters, (((hugs))) to all of you whether you are waiting or recovering from surgery tonight!

    I've been really anxious up to the appointment with my MO and then finding out I need chemo. I was supposed to start tomorrow, but it will be next Friday instead. Now, that normally would just intensify my anxiety ( I am not a patient person and just want to get the show on the road!), but amazingly I feel a real sense of calm tonight. I think that now, knowing what the whole treatment plan is, has really restored my sense of control. I can predict (OK, a least somewhat) what I will and will not be able to commit to workwise and and in my personal life over the next couple months or so.

    So I was able to do a few things today that have been helpful to me. I'd like to share them in case you might find they help you somewhere along this wild ride we are on.

    At work:

    I was able to make a list of things that I need to do before I'm off next Friday and the following week to recover from the chemo. I was able to communicate the things that I can do and the things I need help from my team mates with (big deal for me as I often find it hard to ask for help). It surprised me that when I really looked at what was on my plate and prioritize the things to put first-it was very doable. Some things can really wait until I'm back, but I had to spend to planning time to really see that.

    Personal life:

    I checked out the chemo forums on this site and found a "shopping list" of some items that can be comforting and helpful during chemo. I made my own shopping list and plan to get a few items this weekend. Planning for things to make me feel better was soothing. Nice to have that reassurance and benefit from the experience of others who have been there, done that.

    The worst thought for me about chemo is losing my hair. So I started looks at options for wigs and engaged in a little 'retail therapy' by selecting a few nice hats to wear and sleep in.  I'm sure there are many good places to get these and from what I understand some where they are free, but this site had a selection that appealed to me and the prices seemed good- http://www.headcovers.com/. I'll let you know how they work out. I felt much better being about to do something proactive about the side effect that bothers me the most.

    I have no illusions that there are still challenges ahead and I will have my moments, but a little planning and list making has always seemed to help me regain my balance and sense of control.

    I hope you find some moments of peace for yourself tonight, but if not, know that I am sending many virtual positive thoughts your way!

  • new2bc
    new2bc Member Posts: 253
    edited February 2013
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    Hello TMM60,

    I was just wondering why the oncologist suggested chemo for you. I am kind of in the same situation as you. Was it the ki67, or oncotype test or something else?

  • TMM60
    TMM60 Member Posts: 121
    edited February 2013
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    Hi new2bc- it was because my Oncotype score came back as 28 (high intermediate) and my risk for recurrence is 19%. I have chosen to do the chemo to lower that risk given that I am young (53) and healthy.

  • ReneeinOH
    ReneeinOH Member Posts: 232
    edited February 2013
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    Cuetang--I hope you're feeling better.  Waiting is difficult. Try to make the best use of the time.  I've gotten my state and fed taxes done (still have local to do), reorganized my pantry/shelves (I have a terrible habit sticking things in empty spots, so the question of "do we have more of X" is hard to answer), clean my fridge shelves, and have been stocking up on non-perishables (food, and things such as soap, cleaners, shampoos, etc. so my husband has minimal shopping to do when I'm out of commission).  I figure if others, including my husband, need to step in, things are more organized, and certain things are taken care of so I can truly relax when I am in recovery.

    TMM60-you are so right about planning/prioritizing gives yourself a better sense of control.  I just had my meeting with my staff, looking at what everyone is doing through the end of March; I think we all felt better to have a plan, know what is expected of us/how things are going to work in my absence.  I'm assuming recuperation until about mid-March, but depending what surgery uncovers, may be heading into chemo, so the "how's this going to work" question isn't fully clear for me/my life.  But I'm taking it in segments.  Feeling at peace with what's coming up, and have a sense of what I'm doing between now and surgery.  Love the site you listed, btw.  Tell me what you find/think!  I had no idea you could buy fake eyebrows.

    Hoping everyone is doing OK.  Having a hard time keeping track of where people are in their treatments, so hoping folks can check in.  

  • new2bc
    new2bc Member Posts: 253
    edited February 2013
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    Hi TMM60,

    Does Ki67 also have a role in having chemo? or does it have a relationship with the Grade of the tumor? I still have to ask the oncologist to do the oncotype test. What was your ki67?  

  • PositiveThnking
    PositiveThnking Member Posts: 37
    edited February 2013
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    I know the stupid comments.  I logged on and caught up on emails today before I needed a nap.  There is one person that is determined to go with me to chemo..seriously? 

    Here is what I wrote:

    Subject:  Please Read: Bad News/Good News

    Dear friends and co-workers

    I’ve recently received some bad news—I have been diagnosed with early stage breast cancer. As you can imagine, this came as quite a shock and has made for a highly stressful time for me and my family. To try and reach out to each and everyone would be too stressful so please forgive me for sending this via email.  It is pointless to not tell those I work closely with as you will notice the change.

    We are, of course, taking the necessary steps to treat this and get on with life. I will be undergoing surgery on Monday.   My follow up treatment will include chemotherapy and radiation. The good news is that I am in the care of wonderful doctors who are doing everything they can to get my health back on track. We caught it early and I will be fine.  As my treatment progresses I will assess how much work I can accomplish and if any time off is needed. 

    I am grateful for your support, postive thoughts and understanding as I overcome this challenge and get back to a normal life. 

  • PositiveThnking
    PositiveThnking Member Posts: 37
    edited February 2013
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    A note about planning and prioritizing.  One of my co-workers is a BC survivor.  She said it helped her a lot to have a journal to document appointments, results, keep all the doctor business cards, list of current medications, and how she was feeling. Especially as side effects came up she could go back and tell her doctor exactly when it started.  

    Before surgery my husband took me to the office supply store and I bought a leather Franklin Covey organizer ( the mid-size one). Hey I'm worth it and if I have to use one its going to be nice looking!   I bought lined pages to put in each month and started tracking last sunday.    It has how I felt, good day, bad day, blood pressure (I check at home) etc and after surgery how I'm feeling, how I slept.  If I had a headache.  

    I think its a fantastic idea.

  • Kimberly1965
    Kimberly1965 Member Posts: 32
    edited February 2013
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    Quick note to all my warrior friends. Surgery we ok but heart did something during surgery. So now I'm have a heart monitor. Pain not so bad but I hint the button to keep it al bay. Love you gals!

  • lemon68
    lemon68 Member Posts: 301
    edited February 2013
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    Kimberly- So glad to hear from you, I was thinking of you hoping you would post.

     So proud of your strength, hang in there and keep hitting that button Smile

  • Cuetang
    Cuetang Member Posts: 173
    edited February 2013
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    Thanks for the update Kimberly on the surgery! Relax and recover

  • momtotenkids
    momtotenkids Member Posts: 37
    edited February 2013
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    Glad to hear your OK Kimberly. 

  • ReneeinOH
    ReneeinOH Member Posts: 232
    edited February 2013
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    Wishing you speedy recovery Kimberly! Hoping there are no issues with your heart.

    PositiveThinking--It is a bit unnerving when people have such strong reactions to do "something," especially when it's something you do not want them to do.  My BFF, who lives across the country, sent me a Kindle (I think it's a Kindle Fire), despite me dropping major hints that I didn't want one.  She wants to do something, and has been at the ready to jump on a plane, even.  I think they feel so bad for us, they want to contribute.

  • TMM60
    TMM60 Member Posts: 121
    edited February 2013
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    Thinking of you tonight Kimberly1965 and hoping you are comfortable and resting!

    new2bc- the ki67 was not reported on my final path nor my Oncotype. I asked my MO about it and she said that experts don't agree on what that tests really tell us. There's a source on this site that indicates that as well: http://www.breastcancer.org/symptoms/diagnosis/rate_grade. Here is the key part of what the article says:

    Although the S-phase fraction and Ki-67 level may provide you and your doctor with useful information, these tests are not always reliable. Experts don’t yet agree on how to use the results when making treatment decisions. Therefore, doctors don’t order these tests routinely, so they may not appear in your pathology report. The other results in your report will be much more important in making informed choices.

  • melissa119
    melissa119 Member Posts: 127
    edited February 2013
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    Cuetang...

    The waiting is the worst part. Once you have a plan in place it will be easier. But know that you do have time and two months between diag and surgery is ok. I had first mammo that found tumor on jan 13 2012 then diagnostic mammo and ultrasound jan 20. Saw breast surgeon feb 13 then biopsy on feb 23 then officially diag on feb 28! Then Axillary biopsy and breadt MRI in march and genetic testing. Then CT and bone scans and echo in April! Finally BMX with expanders may 2! So you do have time. Believe me I was freaking out that I just wanted it out! But my BS wanted all the testing done before surgery to make sure it had not spread. Then at surgery got clear margins and the tumor that measured 2.7cm on ultrasound and MRI was actually only 1.7cm with no lymph node involvement. So try to stay calm and don't let your mind go to those dark places. Now a year later I am recovered from surgery and scheduled for my implants in march and completed 16 rounds of chemo. Never thought I would be at the other end of the tunnel but it goes happen.

    Good luck :-)

    Melissa

  • Cuetang
    Cuetang Member Posts: 173
    edited February 2013
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    Thanks Melissa!



  • PositiveThnking
    PositiveThnking Member Posts: 37
    edited February 2013
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    Wishing you speedy recovery Kimberly! Hang in there!

  • lemon68
    lemon68 Member Posts: 301
    edited February 2013
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    Renee's group she started sure is growing, wish it was just the few of us we started with and no one had to come here. That being said I am glad she started it and all of you have joined.

    I am having trouble keeping up with where and what is happening with everyone, another effect of the group growing. Where ever you are in planning, treatment, hope your doing okay with it.

    I am emotional this weekend and scared of what is coming. Finding myself holding back tears and acting like all is normal. I want my DH and kids to not be so scared, I want my normal nice life back. I wont even post about how I feel about the decisions and the fricken waiting!!! Just a small vent this morning. Hope you are all okay, your in my thoughts.

    xo

  • lemon68
    lemon68 Member Posts: 301
    edited February 2013
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    I do have a questions for all of you as I need some advice.

    How many of you were DX in just one breast? If so did you insist on a MRI/etc to check the other before moving forward with treatment? did you trust the mammo that the other side was clean? My BS is very against me having a MRI wants me to just start rads. I want to be sure the left is clean 1st, he is afraid this will cause biopsys there also etc... Is it worth opening this big can of worms? Do I just relax and start my rads on right and not worry about left? I am ILC the sneaky crap that hides and my breasts are dense. I am scheduled for a MRI on Thursday, see MO, RO on Friday and they will give results so all fast. But I am thinking of backing out, my fear is paralyzing me, to hear them say the left is clean would help but to find out its doing the same as its twin may be more than I can handle. I know your going to say do what is right for you I know thats what we tell each other but what would you do?  If I have this crap in my left too then its back to drawing board on making choices. I just cant get over this hurdle, just want some advice.

    thanks to all of you.

  • PositiveThnking
    PositiveThnking Member Posts: 37
    edited February 2013
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    Lemon,

    What I know is many docs have different approaches!  Here's my answers to your questions:

    How many of you were DX in just one breast? Left breast,  right is ok.

    If so did you insist on a MRI/etc to check the other before moving forward with treatment? did you trust the mammo that the other side was clean? I had an excellent radiologist who went over my mammo, diagnostic ultrasound.   My Onc surgeon  wanted me to get a bilateral MRI with high contrast since the cancer had reached lymph nodes.   That MRI showed that the only lump was the one in the left and confirmed it had not spread to the right breast or chest.  So that was fantastic news.

    I personally would have the MRI so you know.  It may or may not affect your treatment.   The surgery was easier than I imagined and its almost a week now and outside of occasional "twinges" I feel ok.  I still take a nap in the afternoon.   My Med Oncologist is the one who wants the PET and I am all for it. I want to know.  And its OK to cry.  Its harder on you to be braver than you feel to shield others.   So I told my husband.  "just so you know,  I am not feeling ok right now and with surgery in the morning  I expect I'll be sobbing by bedtime.   I just need you to hold me and I'll be fine and feel better afterwards."  And you know I did sob uncontrollably.  he held me till I fell asleep and I felt so much better in the morning and he felt like he helped me.  Its that not knowing what to do that is scary for them.  At least for mine.

    He went with me to pick out a wig yesterday.  A totally long impractical one. Its very sexy and glamourous.  But you know, he loves it on me and I'll wear it.  If nothing else, knowing your husband still finds you sexy is a morale boost!

    Hang in there!!!  Each day is one step closer to the end of treatment and getting back to normal!

  • Cuetang
    Cuetang Member Posts: 173
    edited February 2013
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    Lemon68-- I feel for you on this emotional roller coaster. I wake up every morning with panic attacks. However, I KNOW we will get through this stage!



    As for your MRI question, I was only diagnosed with cancer in my left breast. In making my breast surgeon appointments, one of them wouldn't see me until I had a breast MRI done. I'm glad I did it because he's the one I'm going with. Yes, the MRI found two questionable spots on my right side which resulted in another biopsy (was benign). The doctor couldn't locate the second spot on ultrasound -- but the thoughts of having additional crap on my "good" side (even though they assure me it is benign) led me to choose the BMX. I just can't deal with thinking that other spot there coming back to bite me after going through treatments.



    I don't know much about how well ILC is detected by breast MRI? It also wouldn't hurt to have a "baseline" MRI to have either, and give you answers so you don't worry at night about what-ifs. I'll get off my soapbox now..... But you need to do what is comfortable for you.

  • new2bc
    new2bc Member Posts: 253
    edited February 2013
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    lemon68,

    I was also diagnosed with ILC in the left breast which turned out to be IDC after the surgery because the lab did not do a test to distinguish between IDC and ILC. My breast surgeon before the surgery told me that ILC is sneaky and sometimes it does not show up in mammogram. She asked me to do an MRI of both breasts. I would think you do not want to worry about the other breast after the treatment is done in the bad breast. I decided to do BMX because I did not want to worry again about the right breast knowing that some of the tests may not even show ILC. You do not need to make a drastic decision like me but I would think asking for an MRI of both breasts is a reasonable decision. I hope this helps.

  • TMM60
    TMM60 Member Posts: 121
    edited February 2013
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    lemon68- I knew that MRI I had prior to surgery might open up a can of worms, but I wanted to know. When it came back showing an 8mm lung nodule- I really freaked out. Turns out, all was OK when the follow up CT showed it to be just some scarring. I do have an area of "enhancement" in my right breast so that means I will be followed up with another MRI in 6 months. Here's how I frame it in my mind that helps me. I know that with my diagnosis I will be followed closely from now on- so will we all. When my screening mammo came back abnormal (I have them every year, but this year I had it 3 months later than normal because I got busy with life) and it turned out to be a 1.6cm IDC tumor- I thought to myself, how could it have gotten this big in one year? OK, I know that in reality that bugger has been there growing for 10 years and it finally got big enough to detect, but geez!

    You have appointments lined up with a team of experts to help you navigate this long and scary roads. I'm glad to have them all on my side. I'd like to rush things and just get it all over with and as you say "back to my nice normal life". But I am learning to be patient and understand that this road has no short cuts. Take all steps necessary to get all the information you need to make informed decisions. Yes, I'd do the MRI too if I were in your shoes.

    I didn't have a great day yesterday either. Felt so miserably anxious about my chemo coming up on Friday. My DH is scared and anxious too. But, I asked him to take a nap with me and just hold me. It was good for both of us.

    Today, I feel better, not to say that I'm not thinking about next Friday constantly, but I'm fairly relaxed (for now, anyway and I'll go with that!). My husband (who doesn't cook) made breakfast this morning! He burned the bacon and smoked up the house and the eggs were pretty hard- but it was wonderful that he went out of his cooking comfort zone for me!

    Little comforts mean a lot to me these days and I'm trying to savor them!

  • pacools
    pacools Member Posts: 35
    edited February 2013
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    Hello all I haven't had the energy to sign on the computer since my SLNB and lumpectomy last Tuesday. Surgery went well and the pathology report showed clear margins and 5 negative nodes. I see the BS tomorrow and my case goes back for a full review at tumor board tomorrow as well. I have asked them to do the Oncotype trusting which might delay me meeting with the MO and RO tomorrow. Wednesday night I experienced shortness of breathe and the on call doctor recommended calling 911because my blood pressure was so high. EMS confirmed not cardiac so my husband took me to the ER. Lung X-ray confirmed no pulmonary embolism from the surgery just low potassium. I haven't had a panic attack before but I do believe that what was really happening. I haven't cried at all but maybe I just need to admit my fears that many of you have put out there today. I am worried that maybe the BMX would help me with the fear of there being more unidentified cancer in the bad or good breast. I am driving myself crazy thinking about this when I should be thankful for the good news.



    No sure what I expected but both my incisions are bigger than I expected. My tumor was small and at 6:00 position the cut is the entire length of my breast under the nipple. The SLNB is most of my under arm. The pain has been manageable but I would suggest if you haven't had surgery yet you invest in post surgerical bras depending on you surgery. No one has mentioned the need but my BS insists I must wear a binder 24 hours a day for 10-14 days. Sports bras that close in the front no longer exist except online or medical supply stores. Anyone have ones they like? If so where did you find them?



    Lemon68 are you taking medication for panic attacks? I think I need to call my internist to discuss. I am very anti medication for me but I don't need more trips to the ER...

  • TMM60
    TMM60 Member Posts: 121
    edited February 2013
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    pacools- I know exactly what you mean about admitting to fear. I suspect for many of us, as adult women, on this forum who need to be together and strong for our families and in our work lives- this admission comes hard. It truly is OK to cry and admit when you feel fear. The situation we are in is scary. We have real reasons to be anxious and scared. Admitting to that doesn't make us any less the strong, sister warriors we are. If I feel my anxiety needs some meds- I will ask for them. No need to suffer unnecessarily. Your docs will also be there to treat you as a whole person who has emotional needs as well as physical. The nurse who did my pre-chemo teaching on Friday reminded me of that last point. Very important!