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Comments

  • awb
    awb Member Posts: 213
    edited August 2015

    they don't usually recommend a biopsy unless it's a BIRADS 4 or above; I know it's hard to wait, but since you've already had the blood test for BRCA, you will have a lot more information very soon that you can bring to discuss with the breast specialist on the 31st. Hope you get good news at your appt.

    anne

  • alicki
    alicki Member Posts: 85
    edited October 2015
    Hi,

    I've got so many B9 issues going on that I'm also on the six-month clock! I'm closely monitored because of very busy breasts and past issues, no cancer but adenosis, adenomas, and fat necrois + inflammation. Do any of you ever feel like a ticking time-bomb and if so, how do you manage it?

    Thanks,
    ALicki
  • melissadallas
    melissadallas Member Posts: 929
    edited October 2015

    I wouldn't if I just had benign issues like you do. I would try to find out why I felt that way when there was no rational reason to do so

  • Ddw79
    Ddw79 Member Posts: 217
    edited October 2015

    Yes I do but in my case with ADH I really am a ticking time bomb or as I say, an accident waiting to happen

  • melissadallas
    melissadallas Member Posts: 929
    edited October 2015

    Statistically, the facts are that most women with ADH are not "ticking time bombs" either

  • alicki
    alicki Member Posts: 85
    edited October 2015

    Well the pathologist, radiologist and breast surgeon all want to keep me checked up. I think every country is different. Why do I feel like a ticking time-bomb, my last réduction unearthed some more profilerative stuff, that wasn't there before. But I agree, I don't have atypia so less ticking than the women that do, but ticking all the same…….

    But if nothing turns up from now to October 2016, I can go back to regular screening, One year MRI and the other 3D ,mammogram

    yeah

    ALicki.

  • Ddw79
    Ddw79 Member Posts: 217
    edited October 2015

    I would take that for sure over Atypia which is what I came away with. Docs told me 35% increased risk with ADH.


    Not sure if that means 35% more than the average risk of twelve percent or merely 25% higher risk than the non ADH person. And not sure if that is particularly meaningful anyway as stats mean basically nothing for an individual

  • momoschki
    momoschki Member Posts: 218
    edited October 2015

    I was told lifetime risk of 20-25.% with ADH (no family hx.)

  • awb
    awb Member Posts: 213
    edited October 2015

    Ddw----ADH increases risk between 20-25%; (it's hard to explain, I don't completely understand it myself, but I'm told the risks are not just added on top of each other,, the 12% is already included in that 20-25% figure somehow.) ADH without family history is more of a moderate risk, when combined with family history of bc (in a primary relative) then the risk is higher.

    anne

  • Ddw79
    Ddw79 Member Posts: 217
    edited October 2015

    Thanks ladies . I'm confused now because while you both said 20-25% extra risk my docs quoted 30-35. I also don't know if my huge family history of bc and ovarian cancer counts at all in this equation as they all were documented carriers of BRCA 1 and I am mutation negative as of recent tests for any and all gene mutations. Thanks so much for your help and understanding

  • momoschki
    momoschki Member Posts: 218
    edited October 2015

    My understanding is that family history further elevates the risk (even if you are BRCA negative). Perhaps this is how your doctor arrived at the 30-35% figure.

    Also, I think it's not that the ADH increases the risk 20-25% over the average 13%, but rather that the absolute risk (again, without a family hx) over a lifetime (calculated to 90) is 20-25%.

  • Ddw79
    Ddw79 Member Posts: 217
    edited October 2015

    Thanks for that clarification Momo. Makes sense. I just don't see why if so horribly all of my family members with this disease go it due to BRCA 1 genes which I have tested negative for twice along with 18 other genes, family history comes into play? I don't know if this is quite answerable yet. The others all except one tested and documented with exact same genetic mutation. I will ask MO when I see her in Novemember. My risk also may be higher due to age. I am63 and we know that aging is a risk factor

  • tinkerbell49
    tinkerbell49 Member Posts: 176
    edited October 2015

    Hi everyone

    I am also joining the club. I was dx in Sept 2015. I had a core needle biopsy which showed 2 micro foci of adh. Followed by an exsicional biopsy that was completely benign. My mo said I had a 1.5% in 5 yrs and a 12% lifetime. which ment high surveillance only. I explained to her I had cancer in my family history, no bc or ovarian cancer history and my mom and daughter had no cancer. Dad had prostate cancer over 10 yrs ago. She sent me to the genetics across the hall and I filled out all paperwork his conclusions were that I now had a 5% for 5 yrs and a 34% lifetime. So I was confused when he told me family history had not affected my score because of no breast or ovarian cancer in my family history and I really did need to be sent to him because of this. But he could of avoided all this after seeing my paperwork . I don't understand.I've also read statistics that he tyrer cuzick model over estimates. I asked him he also agreed somewhat and said these were just numbers that we can never know. So with all that being said my first 6 mo will be in March 2016. I believe my mo said mri. So now I'm also faced with taking tomoxifen which I just can't bring myself to taking. I would love to here how many chose to wait and what your outcome has been so far. I have also met with a ps and my husband and I have decided if at any point I need a biopsy that I will do a mx on both breast and end the nightmare.

    By the way hi ddw, momo, and ballet12, glad to see you here too.

    Hugs for everyoneMedicatingHeart

  • trish01254
    trish01254 Member Posts: 30
    edited October 2015

    Hi Everyone, The watchful waiting game is stressful but so important. We all are here for the same reason - catch it early. This means that we will need to undergo some unpleasant, anxiety ridden procedures with the main goal of keeping the breast and ultimately keeping our life. We need to consider how fortunate we are that we have the choice to do this. Others do not. I've been riding this train since 2009 and will continue to ride it as long as they let me have a seat. Take care and keep the faith. Trish

  • shoppingchicken
    shoppingchicken Member Posts: 2
    edited October 2015

    Hello ladies. Have been a big fan of the six month wait and see club since last March when all this started. It started when I noticed weird thickening in my left breast. I have asymmetrical breasts(look and feel) and the thickening you can fee on my left is very prominent(upper outer quad). No issue on right.

    Had diagnostic mammo and US at local imaging center which showed nothing, but the radiologists gave me Bi-Rad score of 3. I did tell her I will go see BS regardless of the outcome of the mammo. Not sure why she gave me a score of 3 when nothing is there but I assume she has her reasons.

    Went to see the BS and she said maybe it's just breast tissues or the lobule that are located in different parts of the breasts (left vs right) but ordered MRI. I had MRI+contrast dye and nothing was found. BTW, I don't think this type of asymmetry is common from what I've read.

    Now it's October and I have to go back tomorrow for diagnostic mammo as 6 month follow up. I was doing fine till about a week ago. Suddenly the ugly fear/terror reared up its head and now I'm in a panic mode. Though I think of myself as rational person, all reasoning and logic goes out the window when it comes to cancer. The only consolation I can think of at this point is that since I'm being monitored closely, even if they find something it will be early an stage. :(


    I think I've developed self diagnosed PTSD since March(before the MRI) when I was 100% sure I had breast cancer. The whole experience was so unnerving. When it turned out negative, I promised myself I will live healthier life style and have lost some 30lbs since. My BMI was "obese" before. The problem now is that with the lose of fat, this thickening on my left is even more prominent. Would this affect the quality of mammo somehow? I guess the prudent thing to do would be to tell the radiologist that I've lost some weight?. Sigh sigh..

    Thanks for reading to my rant. I'm just nervous and scared.

  • djabi53
    djabi53 Member Posts: 97
    edited October 2015

    Hello shopping chicken - I completely understand what you are going through. I am the same way with anxiety before follow ups. I too am a very rational woman, but not when it comes to breast issues, and diagnostic mammograms. I have significant family history of breast cancer. I've read everything that any one could possibly suggest to help me calm down before appointments and nothing works for me. I am a complete wreck. I take Xanax which helps only slightly. In August, I had my first 6 month follow up to a benign biopsy last February, and I almost couldn't get myself to the appointment. I have 6 month follow ups for 2 years, and I'm already getting nervous about my appointment next February. It's embarrassing that I can't calm down. I stand with you. I will be thinking about you tomorrow. I wish you good results. Let us know.

  • Ddw79
    Ddw79 Member Posts: 217
    edited October 2015

    Good idea about the Xanax . Mine is coming up on Friday. We are all in this together . It's gruelin

  • Ddw79
    Ddw79 Member Posts: 217
    edited October 2015

    I have enlisted support from a friend. I cannot do this alone. Mine was the real deal though. ADH, a serious game changer and they called it accurately a birads 4. It was indeed and zi can just imagine what I'll see on Frida

  • momoschki
    momoschki Member Posts: 218
    edited October 2015

    My big day is tomorrow-- mammogram. I suppose, on the plus side, maybe now I begin to freak out at a somewhat later date than I did at the beginning. I can be quite optimistic, but then convince myself that this will be the day when something really terrible is discovered. Klonopin takes the edge off slightly, but doesn't stop the thoughts. I think others not in this situation really can't appreciate the level of anxiety. Sometimes I simply cannot imagine having to go through this every six months for th rest of my life..

  • djabi53
    djabi53 Member Posts: 97
    edited October 2015

    Ddw79 - glad you enlisted support from a friend. Yes, we are all in this together. I've also found that early morning appointments help me a great deal to manage anxiety. Let us know.

  • djabi53
    djabi53 Member Posts: 97
    edited October 2015

    momoschki - I can't imagine doing this for the rest of my life. I can't figure out how to do this for 2 years. I'm looking into neurofeedback. Let us know how you make out tomorrow. You are not alone.

  • alicki
    alicki Member Posts: 85
    edited October 2015

    Hello,

    I Was put on this six month watch not due to ADH but Florid DH, adenosis, obésité and past inflammation. Im Only on it until 2017. Just been checked by ultrasound. survived thanks to Xanax. NeXT Time in March.

    Monitored by BS too because where i live breast center specialist look after b9 and cancer conditions.

    I wish you all the best. My Only advice is to find professionals we can trust and trust them. i have already made the décision of a mascetomy if this Gets any worse, but I know that not everyone can due to co-morbid condition .

    Between appointments, I try to live the best I can and say to myself that it should be caught early. The monitoring from that stand point gives me peace, a little at least.

    I've also learnt not to take any non sense from docs. I advocate until I'm happy with the answers I'm getting.

    Best to you all,

    Alicki

  • alicki
    alicki Member Posts: 85
    edited October 2015

    shopping chicken, do tell them you've lost weight!

    As for PTSD, that's highly likely! Been there too. It Needs to be adressed because it can really mess you up

    All the best to everyone for Their test

  • momoschki
    momoschki Member Posts: 218
    edited October 2015

    Very pleased to announce I that I passed my mammogram-- everything fine, although there was a callback for a spot compression that sent me into a temporarily frenzy. Now hopefully I can have 6 months of comparative peace..

    Best of luck to all of you...

  • Ddw79
    Ddw79 Member Posts: 217
    edited October 2015

    thank the good lord!! So happy for you Momo. Now let it be me next.

    👏👏

  • momoschki
    momoschki Member Posts: 218
    edited October 2015

    thanks so much! Now, Ddw, you're next in line!

    I'm just exhausted. It's an amazing how much stress wears you out.

    Something interesting the breast surgeon said: that once I hit the 5 year mark, she's willing to go to a once a year schedule within the mammo/US on the same visit and eliminating the MRI altogether. Not sure how I feel about this. Thoughts

  • trish01254
    trish01254 Member Posts: 30
    edited October 2015

    Glad to see your post Momoschki. I had breast mri this morning for spot BS didnt like last week. Now I will have the fun of wondering when I will get the results. Best to all.

  • Ddw79
    Ddw79 Member Posts: 217
    edited October 2015

    Momo really happy for you.

    I don't think right now you need be sweating the five year plan❤️

  • shoppingchicken
    shoppingchicken Member Posts: 2
    edited October 2015

    Hi Djabi53, Alicki and other 6 month WW club members. Good news. Nothing out of the ordinary found during my diagnostic mammo and ultrasound. Big sigh of relief for myself as well as my nervous hubby.

    BS and a resident(I goto a teaching hospital) both examined my boobs after the imaging results and did mention that the location of the thickening is rather "odd" as it very prominently asymmetrical, but they felt pretty sure it is a very dense breast tissue(just on the left) and not something nefarious.

    Have definitely mentioned the weight loss to the radiologist. :) Thanks ladies for the tip. Will go back mammo/US next April unless something pops up during wait time. Still a member of the 6 month WW club!

    Best of wishes and positive ++++++ thoughts to the other members watching and waiting.

  • tinkerbell49
    tinkerbell49 Member Posts: 176
    edited October 2015

    Thank God momo that is great news woohoo!!!! 🎉💃💃💃💃🙌🙌🎊🎊 Happy dance.....

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