Lumpectomy Lounge....let's talk!

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  • Moondust
    Moondust Member Posts: 510
    edited April 2016

    Sloan, I wonder if you could have the normal tissue from your latest biopsy tested for Ki67. A low Ki67 would put your mind at ease!

  • pennsygal
    pennsygal Member Posts: 346
    edited April 2016

    Sloan - thank you for posting the link. I had my first period at 12, only child at 33, breastfed for 9 months, no BC in family history that I know. My Ki67 was 69 - which was flagged as very high, but which the first surgeon sort of blew off. When I was dx at 51, still having regular periods, now in menopause.

  • zinny
    zinny Member Posts: 281
    edited April 2016

    Sloan - dense breasts (radiologists kept saying,) kids at 33 and 37. BF/pumped for 9 mo each. Period at 12.5. Had IVF complicating the hormone stuff. Don't know about my Ki67. Mom had premenopausal breast ca.

    Mine is bilateral DCIS with LCIS and IDC on the right, so it is all coming off:)

  • Melclarity
    Melclarity Member Posts: 388
    edited April 2016

    Peggy - exactly nothing beats Western Medicine! Im a Holistic Practitioner but NOT using other potions or concoctions. LOL Im a Reiki Master, mine is all about body and mind LOL. Used in conjunction for a deeper understanding of ourselves and others, enabling clarity and change....together with medicine. :)

  • Melclarity
    Melclarity Member Posts: 388
    edited April 2016

    Moondust/Peggy - there are NO comon denominators in Breast Cancer, everyone has a different profile, no 2 people the same, you will not find any physicality the same...so I look deeper than that as to the commonality.

  • Sloan15
    Sloan15 Member Posts: 896
    edited April 2016

    Moondust - That is what I was thinking, but they don't do that test if it's benign. I guess until someone on the cutting edge picks up the slack, they look at our requests as frivolous and without merit.

  • Sloan15
    Sloan15 Member Posts: 896
    edited April 2016

    This is not a common denominator except for people who have a high ki67 marker in healthy breast tissue. It's like having the BRCA 1 or 2 marker. Not everyone has it, but for those who do, it could be helpful with treatment decisions.

  • JuniperCat
    JuniperCat Member Posts: 658
    edited April 2016

    Hi! Forgive me if this is an ignorant question, but do people who have already been diagnosed with BC still benefit from knowing their ki67 score? My doctors never tested for it and I have no clue if I should request that it be done now. Thank you!!

  • Sloan15
    Sloan15 Member Posts: 896
    edited April 2016

    Junipercat - if the pathology on your tumor was done in tbe US, then the ki67 is on the actual report. Doctors don't use the ki67 too much anymore since the Oncotest is a better indicator of recurrence and needing chemo. BUT, the recent research we are talking about now (Harvard study) is that higher ki67 in high amounts in normal breast tissue before cancer might be an indicator of cancer later on. No one is getting normal breast tissure checked since this is a new study. If it holds up in more studies, it would be a test like how some people are checked for BRCA before they get cancer. My thought is maybe some of us with cancer need to get our normal breast tissue checked. But, this is all new and needs more more research.

  • iammags
    iammags Member Posts: 216
    edited April 2016

    Sloan I think I'm a poster child for the study! I started my period at 11 and I'm still going strong at 52. Ugh. I had my first kid at 37 and the next at 39.

    I had my 1st benign lump removed when I was 16. I have (had) large, dense, boobs with loads of calcifications. I've been monitored for years. And luckily so. My cancer was caught early.

    I really don't know if I was that surprised when I was told I had cancer. I have so many risk factors . I'm BRCA 1/2 neg and I'm waiting on genetic test results for other possible mutations. We'll see what happens.

  • iammags
    iammags Member Posts: 216
    edited April 2016

    although I should mention hat u can't find my ki67 score on my path report. Should it be there

  • PontiacPeggy
    PontiacPeggy Member Posts: 6,778
    edited April 2016

    I had no Ki67 test done either, IamMags. I don't think it is standard. I thought that they think it isn't helpful and that the Oncotype test is much better. Could be wrong.

    HUGS!

  • JuniperCat
    JuniperCat Member Posts: 658
    edited April 2016

    Hi, Sloan! Thank you so much for responding to my post. I don't see any mention of ki67 on my pathology report. Should it be in the core biopsy report or the post-lumpectomy report? Thanks!

  • Kokomo26
    Kokomo26 Member Posts: 64
    edited April 2016

    Hi Melclarity...Thanks for explaining about the treatment process in your homeland. It does help to hear it.

  • iammags
    iammags Member Posts: 216
    edited April 2016

    Thanks Peggy . I think that you're right

  • Molly50
    Molly50 Member Posts: 3,773
    edited April 2016

    My ki67 was low. Very interesting if they at least tested the tissue of the women who have prophylactic mx.

  • 614
    614 Member Posts: 851
    edited April 2016

    Hello everyone.  I have worked so much this week that I have not had a chance to login.  I am sorry that I will miss responding to most of you because it will take too long.  However, good luck to all of the new people here and to those of you about to have surgery.  So many of you are having lx's and are about to start rads and chemo.  Good luck.

  • Lovinggrouches
    Lovinggrouches Member Posts: 530
    edited April 2016

    my ki67 was a 1, lowest of the low I guess

  • bougain
    bougain Member Posts: 7
    edited April 2016

    Hi, Diagnosed recently with Invasive Ductal Carcinoma and will be having lumpectomy in the next couple of weeks. These are all new to me and glad that they have this support organization to educate us. How many days stay in the hospital after lumpectomy?

    Thanks (Yolanda)

  • Sloan15
    Sloan15 Member Posts: 896
    edited April 2016

    Hi Yolanda. I went to the hospital at 7 and I was home by 1. No hospital stay for most lumpectomies. Good luck!

  • Sloan15
    Sloan15 Member Posts: 896
    edited April 2016

    Mine was on the tumor pathology report after the lumpectomy (not biopsy report).

  • Melclarity
    Melclarity Member Posts: 388
    edited April 2016

    Yolanda _ we stay overnight for lx here in Oz. Monitored very closely then sent home.


    Most testing is not done here as MO said you have to have many contributing factors to warrant a testing also if things look tricky.

  • 614
    614 Member Posts: 851
    edited April 2016

    Dear Poodles:  I laughed at your TSA story.  I had something similar happen to me.  I was wearing a medical bra when I was flying to Houston, TX to go to M.D. Anderson Cancer Center for my radiation treatment.  The bra has a zipper in the front and they had to "search" me.  It was certainly interesting but absolutely ridiculous.  I thought that the SWAT team was going to swoop in.  lol.

    Dear Grazy:  My radiation tx followed the Canadian study.  I had a higher dose of whole breast radiation for 4 weeks rather than a lower dose of radiation for 6 weeks. In the end, I received the same dose of Radiation as the standard 6 week treatment usually given in the United States.  My RO felt that the Canadian Study works better than the traditional American standard of rads tx.  My cousin also had the Canadian Study 4 week protocol for her rads treatment at Sloan Kettering in NYC.  She just finished less than a month ago.

    To whomever stated it:  My RO is very tall and thin.  I laughed out loud when I read the post.

    Dear Molly:  It is common for a doctor to change from an AI to Tamoxifen if you are having extreme side effects.  Yes, AI's work better but you cannot take AI's if you are having SE's.  Tamoxifen still works.  I know someone who switched from Arimidex to Tamoxifen and she feels SO MUCH better.

    Dear Kanelli:  I don't think that it is common for an oncotype test to be ordered for Invasive Tubular Carcinoma.  I think that is why your MO did not order the test.  Please ask at your appointment so that you feel comfortable with your tx plan.

    Dear Grouches:  Yay for the low oncotype score and no chemo.  Yes, you DEFINITELY can walk during Rads tx.  I walked a lot and I felt fine throughout rads.  I started Arimidex/Anastrazole after my radiation treatment ended, not before.  I had my first zoladex injection and I started Anastrazole on my 50th birthday! 

    Dear LTF and MLP:  Yay on having one more chemo and then being finished.  Both on the same day!  Wow!

    Dear Andy:  You should have the lx to remove the ADH.  ADH and DCIS and IDC are on a continuum.  The pathology report is the only way to make an accurate diagnosis and ultimately, tx plan.  Therefore, you need to have the lx.  Good luck.  I was diagnosed with tons of ALH and I am fine.  You will be too.

    Someone posted about how to tell if you have lumps post rads.  You will have a new normal after radiation.  Your breasts will change and it takes approximately 1 year for the changes to occur.  After you have your next mammo/sono/MRI (whichever imaging tests), you should do a breast self exam.  Make note of how your breasts feel and this will be your new normal.  Any changes to your new normal are the changes that you should bring to the attention of your MO, RO, and/or BS.  That is what my RO told me to do.

    I love the cat pictures.  Pets are awesome.  I have a dog and she is the best.  She gives me so much comfort.  However, she doesn't like to sleep in my bed because she needs the whole bed to herself.  She needs room.  I take up too much room in the bed for her liking!  She sleeps in my bed while I am at work.  She will lie down in my bed when I am petting her and then she leaves as soon as I stop petting her.  It is so funny.

    Dear ORKnitter:  I am so mad at your PA who made that comment to you regarding DCIS.  There was absolutely no reason for her to tell you that information.  DCIS must be treated.  It is stressful and treatment is difficult.  She is totally wrong for what she said to you.  She caused you worry and anxiety for absolutely no reason.

    Dear Chipsy:  You have to do what is right for you.  Phyllodes tumors are scary and you have to make sure that no tumor returns and that you do not have a recurrence.  You need to have the treatment that is best for you.  Don't let anyone make you feel bad about your decision or let anyone judge you.  You are dealing with a serious situation and a mastectomy may be the best treatment plan for you.  Good luck.  Go with your gut but get a second opinion.

    Dear Brandford:  Good luck.

    Dear Heathet:  Sorry about  your relationship with your mom.  You need to do what is best for you because you need to take care of yourself.  I hope that you can work things out with your mom, but for now, you cannot add any stress to your life.  You need to heal and make yourself a priority.  Good luck.

    Dear Dorothy:  I'm glad that your MO ordered the oncotyped test for you.  Don't listen to your family.  Stay on the computer if it makes you feel better.  I did tons of research.  I needed to.  It helped me tremendously. 

    Dear Sandy:  I totally agree with everything that you said regarding Western medicine and alternative medicine.

    Dear Sloan:  Good advice to Heathet and to all of us.  Thanks for the article.  I will read it tomorrow.  I am the poster child for your survey.  I have extremely heterogeneously dense breasts.  My RO said that my breasts are among the most dense that he has ever seen.  I had a high Ki67 score.  It was 21 which is in the high range but just at the start of the high range.  My doctors discounted my Ki67 score.  I had my daughter when I was 30 and my son when I was 34.  I did not get my period until I was 15.  I was medically induced into menopause at the age of 50 so that I could take Arimidex/Anastrazole.  At that time, I was not even perimenopausal.  I got my periods every 28 days like clockwork.  I never took any kind of hormones - I never used the pill - and I never took HRT (of course, I was medically induced into menopause so there was no need for HRT). I have had 4 lumpectomies in my life (2 of these were double lumpectomies - one was my bc tx), I have also had 10 other core needle biopsies in my life, and the SLNB too.  I started having lumps/biopsies when I was in my 20's.  My daughter had a 4cm X 3cm fibroadenoma removed when she was 17 (3 years ago).  I am struggling with my weight.  I do not have the BRCA 1 or 2 gene but I am Ashkenazi Jewish.  I tested positive for a VUS - a gene mutation that is a variable of unknown significance - possibly for the colon.  I had a colonoscopy after my genetic testing and a precancerous polyp was found and removed.  I have also had basal cell carcinoma, 3 dysplastic nevi's (atypical moles), and an aktinic keratosis - all dermatological/skin (pre)/cancer. 

    Dear Melclarity:  You are amazing.   I am glad that you are doing well.  I was worried about you.  You have a wonderful spirit and attitude.

    Hello and good luck to everyone else.  Sorry I did not mention you by name.

     

     

     

     

     

     

     


     

  • chipsy83
    chipsy83 Member Posts: 19
    edited April 2016

    My biopsy is the only thing that has a section for Ki67. It says 10% and was never mentioned in my path report for the lumpectomy( they were done by the same person). But we just sent it to MD Anderson for a second opinion. It will be interesting to see if they mention it.

  • Jclc83
    Jclc83 Member Posts: 246
    edited April 2016

    I don't know where my post went but if you see it there must be an echo in here.

    My Ki67 was 2. I have dense breasts. I have two adopted kids. I've only breast fed my ex husband (and perhaps one or two others shhh). I always hated wearing a bra but in the 80's started wearing one I have one aunt who has ILC. I had a small unpalpable, moderate, grade 2 tumor and yet all my lymph nodes were positive despite having had a normal mammogram one year prior.

    Never gave birth....check. Some family history of BC.... check Just my dumb luck...check.


  • Katzpjays
    Katzpjays Member Posts: 237
    edited April 2016

    Yolanda -

    I just had my lumpectomy last Tuesday. It was an outpatient procedure. Surgery was at 1:00 PM and I was home by 5:30. This included a sentinel node biopsy. Recovery has been easy. The BS gave me Percocet for pain, but I found Tylenol has been enough to handle what had been only slight discomfort (mostly from the SNB incision). Skin closure was with surgical adhesive...it's a little itchy now, but pretty minor.

    Good luck to you! Let us know how you are doing...

  • Grazy
    Grazy Member Posts: 373
    edited April 2016

    I'm just posting a couple of things as I just woke up - will read through more posts once I've had my coffee!!

    Jclc83 - your post made me laugh right out loud!! Good way to wake up :)

    Yolanda - I had my lumpectomy and sentinel lymph node biopsy (SNLB) around 6 weeks ago. Mine was also day surgery, I think most are unless you're having more procedures done at the same time. Give yourself a few days to rest after your surgery. Katzpjays is right, it's the SNLB that will bother you more than the lumpectomy. Take your pain meds for two or three days, as advised, to be comfortable especially at night, drink lots of water, rest and do your arm exercises as instructed. And wear easy to put on clothes the day of your surgery (zip or button front top so you don't have raise your arms to pull something on over your head)... I took a zip up sweater which was easy to put on but my husband had to put my pants on for me because I couldn't do it with one hand! haha There's a good article on this website about what to expect with a lumpectomy.


  • HappyHammer
    HappyHammer Member Posts: 1,247
    edited April 2016

    Ok, so anyone having pain in the lumpectomy area months out! Had surgery in Oct. and rads Dec-Jan. breasttissue is still warm to the touch and "sore". Should I be worried?

    JClc...thanks for the chuckle

  • Brutersmom
    Brutersmom Member Posts: 563
    edited April 2016

    Happyhammer, I am 6 months out and still pain in the area of the lumpectomy. It usually doesn't last more than an hour or two. My breast still gets hot when I wear a bra. If you have new redness or ongoing pain I would call your RO to be safe.

  • Sloan15
    Sloan15 Member Posts: 896
    edited April 2016

    HH - I posted just a couple weeks ago that my armpit is more annoying now than after the surgery. My MO said nothing in my armpit is swollen or out of the ordinary, so it must be the nerves and scar. So yes, I notice it more now that I'm 6 mo out !

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