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Comments

  • djabi53
    djabi53 Member Posts: 97
    edited February 2016

    Ddw79 - I'm glad you are doing well on Evista. My lifetime risk right now is 15%. Because of my age they compare my 15% risk to an 8.9% lifetime risk of an average woman my age. The 15% lifetime risk does not make me eligible for an MRI. My 5 year risk is 3% right now. The oncologist I saw told me that soon 3D Mammograms will be more common place and that at least in my situation 3D is almost as good as an MRI. I don't know if any of that applies to you and your situation. I'm 63. I'm not sure, but I think my lifetime risk goes down a little bit each year -but my short time risk increases each year. Best!

  • Ddw79
    Ddw79 Member Posts: 217
    edited February 2016

    We have much in common. I too am 63 but I guess my risk is higher because some docs recommend MRI and now Oncologist not. I do always get the 3D.

    Are you also taking Evista or are you taking something else to reduce risk

  • djabi53
    djabi53 Member Posts: 97
    edited February 2016

    I just started Evista this month. My GYN said that I am in a grey area as far as risk goes. I think that means I am increased risk v high risk. They are currently monitoring scattered calcifications for 2 years. What is your situation? risk?

  • Ddw79
    Ddw79 Member Posts: 217
    edited February 2016

    I think they told me 20-25% increased risk over average woman with ADH. All family members died of breast and ovarian cancer due to BRCA1. I was tested on two different occasions and no mutations have been found out of 19 tested. I had my family members tested in 1992 ( first in US) because I knew that all of these cancer deaths were not just random. Mother , grandmother , great Aunt and cousin all carried BRCA 1 gene

  • trish01254
    trish01254 Member Posts: 30
    edited February 2016

    hey Stella Best wishes for you this week. Hope you sail through those treatments. My little patch of something went away. Hopefully nothing is questioned next month. My mri's showed incidental finding of a liver cyst. I have been having mild discomfort in right lower rib cage. If they make me have us at my annual mammogram appt I'm going to ask them to check out the cyst to

  • tinkerbell49
    tinkerbell49 Member Posts: 176
    edited February 2016

    Hi

    I am wondering for all the ladies that felt a bump in there breast if someone can describe how it felt. I feel in the same area of my biopsy that showed. Adh 2 micro foci , something like a welt small maybe round I can't pinch it and I have to press hard to feel it. Can someone tell me if they felt the same thing. If yes what was the outcome ? I'm just wondering if it could be a cyst or something benign or the dreaded c word. I go for my first follow up March 24 I don't know if I should trust a 3d monogram before the mri. I'm so worried about this I know it's going to be something bad. I'm wondering if maybe they missed something the first time around.

  • djabi53
    djabi53 Member Posts: 97
    edited February 2016

    Tinkerbell4. - I've never felt a lump but I am in an every 6 month follow up for 2 years and I have high anxiety as a result of this process. My 2nd 6 month follow up is this Monday and my anxiety is worse than it was with the 1st 6 month follow up. I am already on Xanax. I don't know what helps you with anxiety, but because your appointment is about a month away, would it help you (or would it make your anxiety worse) to call now and let them about this new finding? As Ddw79 said to me - holding your hands. And let us know.

  • Ddw79
    Ddw79 Member Posts: 217
    edited February 2016

    How are they following up with you ladies? All of this surveillance just drives us crazy . I never felt a lump either but I would do what Djab53 suggested and call earlier .


    My MO at Dana Farber told me they are now not recommending The MRIs . Anyone else here this? I would be due to schedule it in April but now not sure what to do.


    Hugs to both of you❌⭕️

  • tinkerbell49
    tinkerbell49 Member Posts: 176
    edited February 2016

    Thanks Dijabi53

    I have a prescription for xanax but I've been taking it to help me sleep. It's not really working. I hate to sound like a crybaby but I feel it's going to be something bad. I guess I was hoping it would give me some time like momo and ddw79 and go through menopause to take Evista. Tomaxifen scares me but cancer scares me more. I don't think six month would have made a difference in the outcome, my onc said I had time. I sure hope she was right. Sad


  • momoschki
    momoschki Member Posts: 218
    edited February 2016

    I can totally identify with the 6 month anxiety-- and I've been doing this for 5 years! Sometimes it really feels like I live life in 6 month intervals.

    I've been getting MRI's every 2 years. I don't know if the revision of the guidelines will mean that these are no longer covered, but I'd be inclined to pay out of pocket if they are not, just for the peace of mind they give me.

  • Ddw79
    Ddw79 Member Posts: 217
    edited February 2016

    so Momo you don't get an MRI each year , just every other year? Five years is a long time to be going through this s..t. I hate it too. It's so awful. Can you describe your surveillance schedule ?


    Are you taking Tamox?

    I know Tinkerbell Tamox was not recommended for me because I hit menopause at 40 and I'm

    Now 63. It took me almost a year to mentally get myself in gear to take Evista.

    The anxiety is a burden. Keep posting. That might help. We are here for you.!!!

  • momoschki
    momoschki Member Posts: 218
    edited February 2016

    The surveillance schedule my BS came up with goes as follows:

    Fall: mammo , spring ultrasound

    Following year: fall:mammo and spring MRI

    Repeat every year. Ad nauseum.

    Five years of this IS a long time, but everyone I consulted with concurred that in my situation, mastectomy was overkill. I waited for menopause (I was 53 when dx'ed) and then began Evista, which has been largely uneventful. I'm not sure thIs whole ordeal gets easier over time, but in some bizarre way, it has become my (now not so) new normal.

    One change I have made in my routine is that I used to see an onc every six months. When he died suddenly at the end of last summer, I did not replace him. My gyn happily prescribed the Evista and my PCP can do all the blood work the onc did. I'm delighted to have two fewer appts each year

  • djabi53
    djabi53 Member Posts: 97
    edited February 2016

    momoschki - wow 5 years - God bless you! I think I might have literally gone crazy if I had 5 years of surveillance. Thank you for the inspiration. Monday I have my 2nd 6 month follow up of a 2 year surveillance and I'm a wreck and it's only Thursday. I went to a high risk breast cancer clinic last summer for my genetic testing. An oncologist did my genetic testing and then accepted me as her patient even though all my testing was negative. She offered me Evista. My risk is 15% lifetime risk, but because my age is 63 and I have outlived some of my risk - my 15% lifetime risk is compared to an 8.6% lifetime risk, which is the risk for an average woman my age with no family history or additional risk factors. Lifelong my risk will be a little less than double that of the average woman. I don't have cancer or pre-cancer (I have bilateral calcifications that are being watched for 2 years) and so I didn't understand the benefit of seeing an oncologist every 6 months. My gyn agreed to follow me and prescribe the Evista. My gyn ran more blood tests than my oncologist recommended - a comprehensive metabolic profile, lipid profile, vitamin d, calcium and dexa scan. My gyn is an oby/gyn fellow and my mammograms are done at a Breast Imaging Center of Excellence where all the radiologists are also fellows. I too, am delighted to have fewer appts each year. I've been on Evista for a few weeks and no SE's so far - perhaps an occasional very slight flush. How long will you have this surveillance schedule? Frankie

  • tinkerbell49
    tinkerbell49 Member Posts: 176
    edited February 2016

    Hi Momo

    Yes these 6 months check ups are giving me mayor anxiety. I too want to wait for menopause but I don't know if I'll be so lucky. I felt something in my left upper outer quadrant of my left breast, where I think my biopsy was. I don't know if it's fat or something else it kind of feels flat it's weird. Then again I don't really know what a cancer lump feels like or any other lump I've only had calcification. I have my mri March 24 I'm hoping my period won't interfere with my schedule, since Feb only has 29 days. I'm a mess I try to keep busy but it's always on my mind. A month seems like a lifetime especially after what ever it is I'm feeling in my breast.

    Ddw yes I was given the option to take tomaxifen and filled my prescription but haven't taken not one pill. I think if I slide by this time I'm definitely going to give it a try. I just hope it's not to late. Maybe it will give me some peace of mind or just make me worry about all the side effects. There is no winning here without major sacrifice it's definitely a life changing experience.

    I asked before about soy lechitin and if anyone has any information on this subject I would love to hear your opinions.My mo told me to stay away from soy, but it's been hard since chocolate is my comfort food. I read that soy lechitin does not contain the ingredient isoflavones which mimics estrogen. So it's not harmful. Does anyone have any info on this subject?

    Djabi yes this is terrible I have 5 years of this if I'm lucky and the monster doesn't get me first.

    Heart



  • trish01254
    trish01254 Member Posts: 30
    edited February 2016

    hi tinker bell. The surveillance should be looked at like going for dental cleanings. 😣 a necessary check up that gives you a great feeling after it's over but you dread going to. Tamoxifen for me hasn't been a big deal. I take at night before bed along with my Effexor for the flashes. I had ovaries and hysterectomy last August which put me in immediate menopause. That's much worse than any SE from the tamoxifen. I want to do whatever I can do to save my other breast. I am still high risk due to lcis plus prior dcis.

  • tinkerbell49
    tinkerbell49 Member Posts: 176
    edited February 2016

    Hi Trish01254 you are right and I am hoping for that good feeling when I leave the drs office. I'm just a mess with this new bump I'm feeling in my breast it might be fat buildup from where my biopsy was done. I'm hoping that's all it is. I'm definitely going to give tomaxifen a try and see if I can tolerate it.

    ThanksHug

  • Ddw79
    Ddw79 Member Posts: 217
    edited February 2016

    I am visiting a friend now. She had breast cancer and was on Tamox for twenty years even before it was widely prescribed in the US. She described no problems with it at all. The Evista sure has been easier than I thought . Now like you Tinkerbell I almost wish I had started earlier. Took me a full year to start .


    Many thanks to all of you wonderful women who resounded to my quiery about surveillance . That helps a lot .


    I'm on vacation and so trying to think about this even for just a few hours


  • tinkerbell49
    tinkerbell49 Member Posts: 176
    edited February 2016

    Thanks ddw I hope I'm not to late. Expecting the worst but wishing for the best.

  • djabi53
    djabi53 Member Posts: 97
    edited February 2016

    Ddw79 - have a great vacation!

    Tinkerbell - I know exactly how you feel. My 2nd 6 month follow up is tomorrow morning. I started Evista 3 weeks ago and I hope I'm not too late too.

  • tinkerbell49
    tinkerbell49 Member Posts: 176
    edited February 2016

    Good luck djabi53 sending positive thoughts yours way Heart

  • djabi53
    djabi53 Member Posts: 97
    edited February 2016

    I had a long appointment today - bilateral diagnostic mammogram with magnification followed by an ultrasound for a cyst they are watching. I was there for over an hour. But got the all clear - no changes! I'm still on 6 month follow ups for another year but today was a good day. They keep telling me that 2 years is their protocol for all calcifications. I took xanax last night and had to take another xanax while I was sitting in the waiting room to control my shaking, but I got myself to the appointment. Best wishes for good results for everyone in the 6 month waiting loop. Thank you for sharing your feelings and experiences. I'll stay on this thread to support others. I'm doing fine on Evista and I'm glad I'm taking it. I also have monthly lymphatic breast massage by a cranio sacral massage therapist. This morning was grueling, but I now have a sense of relief after such an intense and comprehensive work up. Early morning appointments helps me a great deal.

    Frankie

  • tinkerbell49
    tinkerbell49 Member Posts: 176
    edited February 2016

    Great news Frankie happy it all went well for you...

    💃💃💃💃💃💃

  • trish01254
    trish01254 Member Posts: 30
    edited March 2016

    let's hope all our appts go the same.

  • Ddw79
    Ddw79 Member Posts: 217
    edited March 2016

    So happy to hear this news!!!

    Doing a happy walk for you! The stress is mind blowing

  • panthrah
    panthrah Member Posts: 140
    edited March 2016

    Tink- I felt/found my lump. it felt like an M&M. definitely not part of my reg boob tissue. it ended up being a fibro bump.. no biggie. now the other one ( i have lots) that they are watching feels like a Mike N Ike .. long and slender. my next check up ( no u/s or mammo this time) is march 22... just a manual check and she thinks we should actually be able to set a regular structured 6/6 schedule.

  • tinkerbell49
    tinkerbell49 Member Posts: 176
    edited March 2016

    Thanks pantharh I guess I can say m & m, but recently I really can't feel it. I have scar tissue from my lumpectomy. You are too funny describing your lumps. Lol. Good luck on your follow up on March 22. I have mine for March 24 for an mri. Keeping my fingers crossed and scared to death. Are you taking any prevention medication?


  • Ddw79
    Ddw79 Member Posts: 217
    edited March 2016

    good luck Tinkerbell . Prayers for no changes !

  • panthrah
    panthrah Member Posts: 140
    edited March 2016

    Being that i call it M&M also means I get to eat M & Ms after my appointment :) I cant take Tamoxifen because I have the blood clot gene thing .. so mines more of a " good luck lets see what happens" kind of method. and I definitely have scar tissue in there. While the first lx was healing.. the area/building scar felt like one of those prickly ball/seed things that fall off the tree. dr said " this is what you DONT want to feel" giving me a tactile way to discern the difference between the smooth m&m and the rough seed ball. Im pretty much two bags of marbles and and this will be a long bumpy road. but if they keep poking and removing.. Ill end up looking like i have two golf balls on my chest

  • tinkerbell49
    tinkerbell49 Member Posts: 176
    edited March 2016

    Thanks ddw79...Medicating

    Panthrah you always make me smile when I read your post. I like m&m's too only the kind you eat. I know what you mean everytime they think they see something there goes another chunk. It's awful sometimes I just say take them off , but then I chicken out. It's definitely a rough road ahead....

  • tinkerbell49
    tinkerbell49 Member Posts: 176
    edited March 2016

    Thanks ddw79...Medicating

    Panthrah you always make me smile when I read your post. I guess you got to make the best of it. I like m&m's too only the kind you eat. I know what you mean everytime they think they see something there goes another chunk. It's awful sometimes I just say take them off , but then I chicken out. It's definitely a rough road ahead....

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