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  • joan811
    joan811 Member Posts: 1,980
    edited August 2020

    Hi Lucy55,
    I am doing well. It has been a tough year for BCO old-timers...will send a PM.
    I hope you are doing well and that the virus threat is getting better.
    It will be 9 years (next week) since my Stage I lumpectomy. I am happy to say my surgeon's reassurance about all my concerns turned out to be well-founded so far!
    I am glad to see that newly diagnosed ladies are finding this thread where they can talk about their upcoming procedures and concerns. I remember it well...all those questions and uncertainties.
    I have made life-long friends here. My original thread from August 2011 has gone quiet but occasionally we touch base.
    farmerlucy, you had quite a time with your BMX followed by dx. I am going to send a PM about your elective ovary removal.
    My question remains -- why oh why have female cancers not been decoded for vaccine or cure? Yes, it's "treatable" but disrupts physical, emotional, family, social, and occupational life, to name a few.
    Best wishes,

  • Nadinenadine
    Nadinenadine Member Posts: 2
    edited September 2020

    Hi there my fellow Breast Cancer Sisters and Brothers...I am still cancer free after 11 years. In the beginning and for a long time I had a rough time with the reality of having BC. I did the 5 year drugs and gained a ton of weight. ( I have since lost it all and then some). I wrote a journal when I was up to it on my daily/and or weekly ways I felt. I have only opened it a couple of times over the years and to this day know it was the best thing I did to write it out. I have not been able to actually sit down and read it all. It was difficult times for me. Now all of the years later I will admit I have life long chemo brain and other side effects due to chemo. But over all things are a thousand times better for me. I decided against reconstruction. That was my personal choice and still feel the same on that choice. I wear bras that are more attractive than I did back before BC. I have a form that fits nicely into these "special" bras and unless I tell someone I have only one breast no one knows. My BC wasn't found by a mammo but rather a growth of a different sort that my primary doctor found. Within two weeks I had my surgery and had my breast removed. The thing I can't stress enough now is ask a lot of questions and ask even more questions. My cancer was found in a biopsy that was done. I was stage one. My surgeon didn't feel I would need to have chemo but was told to meet the chemo doctor anyways. Way that is where my questions were not coming out of my mouth. All I could think of was I had just lost a breast and now he wants to do chemo. My chemo was a rough road. Long story short I had no port but did beg the doctor to give me one since my veins were blown and I was a terrible sore mess and only limited to one arm for the chemo. He actually laughed at me and told me I was have way done with the treatments. Stupid me I didn't know where to turn or what to do and continued on. My very last treatment check up I fired him!!! I then got a different doctor who is a wonderful doctor and continues to this day to be my doctor. I see him once a year. He is my saving grace for sure!

  • joan811
    joan811 Member Posts: 1,980
    edited September 2020

    Hi Nadine,
    Thanks for sharing your story. I think your advice to ask questions all along the journey is the best advice.
    It's too bad that your chemo oncologist was not listening. Did you ever get that port put in? I cannot tell from your story...Yes, you probably should have consulted another oncologist about that problem with the veins.
    Good for you for switching doctors.

    I did not like my first medical oncologist who was young and flipping her hair and looking at the computer and not at me during my appointment. She told me that it was my choice after surgery whether to have chemo or not. (all her years of education, and she left it up to me) She explained the side effects and i said I felt terrified. Her answer was "well, you asked me to tell you!"

    I did the onco type test which came out at 13. She told me that was a borderline score. I spent the next two weeks agonizing over my decision. I called a few other doctors. I finally had one doctors tell me that my score was low...and that if I were her patient she would not recommend.

    So I chose not to have chemo. There was a frequent turnover in oncologists, so I had a few. That was 9 years ago this fall.
    ===The other thing you mentioned was keeping a journal. I strongly believe that writing things down helps so much. When we look back, we can remember what happened; but the memory is safe in our writings so we no longer have to keep it in our mind. And when we do choose to look back, we often realize how much better we feel now, and how we rose to the challenge.

    I hope you continue to do well!

    Eight more days of summer!!!!


  • edwards750
    edwards750 Member Posts: 1,568
    edited September 2020

    13 is not a borderline score. Good grief. It’s low. Mine was 11

  • Carrieleeb
    Carrieleeb Member Posts: 4
    edited October 2020

    I am stage I Grade 2. I have been given the choice of lumpectomy with radiation or mastectomy. My HER2 came back negative so for now no chemo is needed. I am waiting for my genetics test results.

    I am contemplating doing a double mastectomy with reconstruction with implants. I really don't want to do radiation or worry about having breast cancer again.

    Any pros or cons or help with deciding which route to go? I understand we are all different but could use some other's experience.

  • debal
    debal Member Posts: 600
    edited October 2020

    hi Carrie, I had very dense breasts, PR neg and just could not deal with worrying about what would be missed on mammogram every year. It took 3 years for my BC to show up. No regrets for the path I chose. Please know there is still worry after double mastectomy. Statistically it does not lessen your chance of metastasis but I believe slightly lower for local recurrence. Take your time in deciding. I'm sure others will chime in. Take care

  • janett2014
    janett2014 Member Posts: 2,950
    edited October 2020


    I was also Stage 1, Grade 2, Her2 neg. Because it was in both breasts, my breast surgeon recommended bilateral mastectomy, and I chose to have reconstruction with implants. I had surgeries, but no chemo and no radiation. I’m happy with my choice which was 6 years ago.

    I feel like I got two “good” things out of it: a breast reduction which I needed, and no more mammograms. Make no mistake though, I definitely CAN get breast cancer again. I do have regular checkups though with my breast surgeon and oncologist (plastic surgeon too for 3 or 4 years or so after surgery). I think there’s a good chance that if it happens it will be caught early.

    The decision is very personal; do what feels right for you.

  • celiac
    celiac Member Posts: 1,260
    edited October 2020

    Carrieleeb - I went with lumpectomy, radiation and aromatase inhibitors. My tumor was small and not rapidly growing. No chemo was done, based on Oncotype results. Not sure exactly what size tumor you have or if other factors are leading you towards mastectomy & implants. Tough decisions once this journey begins. Hope you have a good cancer care team and support system.

  • farmerlucy
    farmerlucy Member Posts: 596
    edited October 2020

    My thought is if you are unsure, start with the least invasive surgery. My breasts were extremely dense and up to no good. I did the Bi lateral mastectomy and never looked back. It's not the same as my original breasts, but it is what it is. My implants are under the muscle. I don't even own a bra. That is the best part. I did 3D nipple tattoos so there is no bump. I'll be nine years out in February. I still have the original set. I haven't had any issues with them. It always feels a bit tight over the muscle, but there is no pain. It's the new normal.

  • marie914
    marie914 Member Posts: 152
    edited October 2020

    lostpup - I had a single mastectomy and reconstruction on September 14. I had two drains and both were removed. One at 4 days and one at 9 days. They wanted to give me six weeks and I took two weeks. So I started back this past Monday. I work from home and on a laptop. I did have trouble with typing with left arm. I was really tired the first two days but by the end of the week was okay except for left arm aching. I tried to support it when I was typing.

    I would maybe take three weeks if I had to do it again. especially if you have to go into work or really active at work. I mostly sit at work.

    Good luck with recovery.

  • Belinda977
    Belinda977 Member Posts: 150
    edited October 2020

    Here's what they don't tell us.....after our initial treatment if we didn't have a DMX, we have an increased risk of new primary in the other breast. This is not a recurrence but a new primary. The "environment' that created the breast cancer in the first place is still there. It happened to me. I would like them to be more forthright with those statistics.

  • moth
    moth Member Posts: 3,293
    edited February 2021

    brand new research (published 2021 in Annals of Surgical Oncology).

    Lumpectomy is associated with IMPROVED SURVIVAL compared with mastectomy for early stage breast cancer - A Propensity Score Matched Comparison Using the National Cancer Database

  • Kikki
    Kikki Member Posts: 5
    edited March 2021

    Hi Moth. Thank you for posting this information with the link. I had a lumpectomy (Jan 2020) with rads(FebMarch 2020) and will be 44 years old in November. I am a registered nurse and found that I was often judged by some of my coworkers/friends regarding having a lumpectomy instead of a masectomy. I felt that since my IDC was very small (8mm, no chemo) and because I’d have the same 5 year survival rate and because I’d have to take my bottle of poison(Tamoxifen) either way, that a lumpectomy was the best choice for me. I couldn’t see amputating my breast. I also would have had a hell of a time deciding between whether to get implants or not. There were other nurses who had stage 0 cancer and had bilateral masectomies. I never judged them, because once you’re in this breast cancer boat you realize how awful it is to have to make either decision. Shocked. Having said that I did him and haw about my decision for the weeks leading up to it. Thanks for some positive reassuranceSmile

  • cassiecanada
    cassiecanada Member Posts: 101
    edited March 2021

    Hey kikki- my 8 mm tumour was treated

    same as yours- i feel we made right choice-

    bottom line is that each of us makes our decision

    based on what wr feel is best choice for us

    after discussion with our doctors and pondering

    options etc- That said, it surprises me that

    others would question your decision not to have

    a mastectomy- they are not you and you shouldnt

    have to feel defensive about your choice.

    i , too, pondered the option

    of a mastectomy even tho it wSnt tecommended.- (2019)- i then found this site to reach out and had a very

    humbling dislogue with a few women that had recurrences even tho they had mastectomies/

    i remember asking one what she meant by recurrence because she had a bilatetal mastectomy- thinking maybe i wasnt reading right-

    she explained in detail how a mastectomy is no

    guarantee against a recurrence ( always some breast tissue left/ nodes/ chest wall etc )- just as

    a lumpectomy/radiation is no guarantee-

    was pretty surprised by that i have to say- but

    since then, i have read many similar posts by

    other women- its disheartening to think you

    are doing the best thing and still have a recurrence- with either procedure- a mastectomy

    may be the only option for some women- for

    others it may not be recommended as the first

    choice- so like you, i chose the least invasive

    surgery given the pathology-

    shpuld i have a recurrence, i have decided already

    that i would have a mastectomy ( regardless of

    what side the recurrence- altho i know you cant

    irradiate same side again)-

    so dont let the negative opinions of others have you second guess your choice -( altho it

    sounds like they arent- good for you !!

  • Kikki
    Kikki Member Posts: 5
    edited March 2021

    Hi cassiecanada! Smile Thanks for the words of encouragement, it’s been a rough day. I had a follow up with a new medical oncologist because my temperature has been hanging between 97.8-99.5 at times. When my temp gets higher I get the chills. It will stay there for 1/2 hr to a few hours and theres no particular pattern to it. Sometimes its lower in the morning. This has been going on since October. Saw my reg doc and an infectious disease doc, but basic labs looked good. They even tested me for Covid, but nothing. I asked this new MO if my symptoms might be related to my Tamoxifen as I’ve also noticed my hot flashes are off the charts these past 4 months. He said not the chills that I get. I started taking Tammy a year ago in April.

    I feel like the back of my head gets so hot, that one day it might just blow off completely. I wonder what this medicine is doing to me. This new MO was nice, but could really give a shit, lol. I’m going to circle back around to Infectious disease and my reg doc I guess; it’s just odd.

    I, like you felt as if the cancer does come back at least it can go to my boob and hopefully not my chest wall. Although, I know there’s no guarantee for anything. It’s just nice to talk to someone who understands. I quit my job as an E.R. nurse last May because of Covid and I have a nice family, friends, neighbors, etc. I just miss being able to work and be me sometimes.

    I also don’t know if you’ve been treated this way, but I feel as if my concerns during radiation(my skin came off, it was very painful), and with Tamoxifen are never addressed. All the docs have to say is: you have a great prognosis. To which I say, yeah whatever, I need to be able to live my life and not feel like I’m a supernova about to burn up or have the chills so badly I can’t get warm! I’m hoping maybe this too is a phase and shall pass. Medicating

  • beaverntx
    beaverntx Member Posts: 2,962
    edited March 2021

    Kiki, despite what your MO said, I, too, have chills to the bone sometimes which started after I started on Tamoxifen. Like almost every other side effect, the chills are cyclical and not currently active, thank goodness!

  • rah2464
    rah2464 Member Posts: 1,192
    edited March 2021

    Kikki - I call those chills on Tamoxifen the "shake and bake". I can get bone deep chills right before a blazing hot flash. And yes that heat can concentrate like crazy in the back of my head if I am sleeping. I get acupuncture about every three weeks, and that last week my flashing cycle builds.

  • Stellawt57
    Stellawt57 Member Posts: 65
    edited March 2021

    Morning ladies, I to have had several of the same SE as you are experiencing while taking my anastrozole. I started seeing an Integrative Dr. she had me start taking some supplements to ease or eliminate the SE. The best thing I did was starting acupuncture for all of the SE it has been awesome 👏 My warm flashes are managed with the acupuncture as well as taking 1-400 mg vitamin E recommend by my MO. I don’t take any supplements without my MO or Integrative Dr. recommendation. I too have chills but they are managed with the acupuncture. I hope this post gives some insight for you to think about. Hugs to you and wish you all the best

  • Stellawt57
    Stellawt57 Member Posts: 65
    edited May 2021

    I had my 2nd mammogram on Wednesday since my diagnosis with clear images! 👏 I always have a lot of anxiety prior to my mammogram. Hopefully all are returning to a more normal life after your diagnosis and the pandemic! My best to all!

  • piperkay
    piperkay Member Posts: 130
    edited May 2021

    Hooray, Stellawt57!! You can breathe easy for a while now!

  • Lucy55
    Lucy55 Member Posts: 2,703
    edited May 2021

    piper ...Yay ..great news !!!

  • horse2310
    horse2310 Member Posts: 15
    edited May 2021

    Mine was stage 1 grade 1 and 1cm..lumpectomy/rads/arimidex...strong ER positive....

    I recently looked at my pathology and the FISH test was negative with a ratio of 1.1..although the first test,,ICH was equivocal...with numbers of 2.1 and 2.4...would this mean that I’m borderline or HER 2 low? Should I be taking another medication with the arimidex?

    Thanks..I’m just paranoid.

  • lef
    lef Member Posts: 32
    edited September 2022

    Me, too. But ... it was only the oncotype testing that led to the change. Starting chemo in two weeks. Preparing and hoping for the best.