December 2011 Surgeries - want to wait together?

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  • QuinnCat
    QuinnCat Member Posts: 3,456
    edited February 2012
    Blessings... all of my friends love my current little breasts (at 250 cc each) despite my belly fat - me included, and my girth is narrow, but my body projects (both directions!)!!  I never want to be more than a small C or large B, though I think my PS thinks I should be a D with my frame!  In any case, it is my personal opinion, that as we age, our dense breasts get more fatty, and larger, and that is one thing that makes us look older.  Just my opinion.
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  • sandracb
    sandracb Member Posts: 1
    edited February 2012

    Does anyone have any suggestions.  My mother is 70 and had a double mastectomy in December, now the Doctors have recommended radiation and my mother doesn't want to do it.  Any information out there on side effects, personal struggles and/or solutions? She had triple negative on right side, didn't find any on left when they did Mas, however, she was stage 3 and did have it in multiple nodes.  Thanks so much!

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  • CookieMonster
    CookieMonster Member Posts: 1,035
    edited February 2012

    I've just re-upped with Weight Watchers and hope to get much closer to goal before my Stage II surgery (probably this summer).

    I don't like using BMI for goal weight, and recently discovered that I have dense bones (124% of normal in some spots). Does anyone know of a good way to determine a goal weight not just based on BMI? Thanks.

    -Judy

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  • CookieMonster
    CookieMonster Member Posts: 1,035
    edited February 2012

    sandracb - Sorry to hear about your mother. This sounds more like a case for chemotherapy, not radiation. (from what I understand usually triple negative and node involvement mean chemo.) Are you sure they're wanting to do radiation? Why did the doctors say they wanted to do it?

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  • QuinnCat
    QuinnCat Member Posts: 3,456
    edited February 2012

    Cookiemonster - perhaps a body fat test.  They have hand held ones (theoretically they would pass a current through upper body, biasing for upper body fat) and the ones on the floor scales (which would seem to bias fat in the lower body).  I think under 24% bf for a woman is probably a good goal?  My general rule, when I was into finding a good weight was to take my lean body mass in lbs (at that time, the local community college was doing under water weighing...the former "gold standard") and add 25-30 lbs of fat to that weight, depending on one's frame.  I am large frame, so maybe the 25 is too high for a smaller woman.  e.g My LBM (when lifting weights) was 128 lb...add 25-30 and I could weight 153 to 158...which was about as small as I could get!

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  • faithhopenluv
    faithhopenluv Member Posts: 323
    edited February 2012

    Kam170 - because of the high grade, my age (41) and the size of the tumor my MO had said chemo was likely before the lumpectomy.  Then, it was in one node, so at that point a ocnotype test wasn't necessary as it is standard protocol with node involvement. I kind of stalk the January chemo thread and ask a few questions here in there, but I'm one of the first to go in the Feb thread so I feel I have more to share there.  Both are really good groups :)

    sandracb - it is my understanding they consider the age 70 heavily in whether or not the risk of chemo outweighs the benefit.  Radiation is much easier to tolerate. I've heard many people say that radiation is very manageable except that you do need to go every day although it is for a short period of time.  There are some radiation threads out there as well, you may get some more specific feedback there. Good luck, I am sure it is very hard to be in your position, giving parents guidance can be pretty tough.

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  • QuinnCat
    QuinnCat Member Posts: 3,456
    edited February 2012
    Faith - you just confirmed what I have read, that most Grade 3's, like us, end up with higher Oncotype scores (nodes not involved, ofcourse), and if not "yes" to chemo, at best we end up in the intermediate area.  I mentioned that to my MO and he said "not necessarily so."  Hmmm....ofcourse, he was very cut and dried kind of guy. Leave it up to me..I will treat your tumor "the best way possible." He should have my Score today, but I don't see him til Thursday.
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  • Bogie
    Bogie Member Posts: 286
    edited February 2012

    Kam and Faith,



    My Oncologist told me my grade 3 did not mean much, and my Oncotype was low.

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  • Kaara
    Kaara Member Posts: 3,647
    edited February 2012

    sandracb:  I thought the purpose of getting an mx is so you don't have to have radiation and chemo.  I am 71, had a lumpectomy and chose not to do rads because there are studies that say it doesn't benefit women over 70 all that much.

     That said, mine was an early stage, low grade bc and quite different from your mother's.  I would suggest doing research on triple negative treatement for women over 70 and see what comes up.  Also your mother's health comes into play as well.  Will she be able t withstand the effects of radiation on her body, particularly her heart and lungs.  These are all things to consider.

    You must be your own advocate and learn as much as you can about the treatments before making your decision.

    Wishing you the best...prayers and healing energy to your mother. 

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  • Blessings2011
    Blessings2011 Member Posts: 4,276
    edited February 2012

    "I thought the purpose of getting an mx is so you don't have to have radiation and chemo."

    Kaara - I had my BMX fully aware that if there were cancer found in the lymph nodes, it would mean chemo,and if there were cancer found on the chest wall, it would mean radiation. In my case, the nodes were clear, and the margins were clear, but both chemo and rads could have been in my future.

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  • Ginger48
    Ginger48 Member Posts: 1,978
    edited February 2012

    I made it through my first 5 day work week only to be rewarded by getting the stomach flu that has been going around school...ugh! Pec muscles are no fun when you are throwing up.

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  • Bogie
    Bogie Member Posts: 286
    edited February 2012

    BMX can still have chemo if Oncotype score determines it.

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  • QuinnCat
    QuinnCat Member Posts: 3,456
    edited February 2012
    I just did a thorough search on the Oncotype website.  It does appear that Grade 3 has a higher chance of an Oncotype score > 31, but there is still a chance of a Low and Intermediate score.  My first pathology gave me a very high Ki67 score of 60% (plus grade 3).  Ki67 is one of 21 of the Oncotype tests....and one of the handful used for the "Proliferation Rate."  The Proliferation Rate is given the highest of weights of the 6 categories...a lot higher than the other 5 categories.  My only hope for a low Oncotype Score is that the Ki67 is outnumbered by the other factors involved with the Proliferation Rate.  Bogie - do you happen to know what your Ki67 score was?  I also had a Petscan and was given a high SUV number. On the good side, one gets good credits for ER and PR positive in Oncoscoring and I was 95% ER.
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  • CookieMonster
    CookieMonster Member Posts: 1,035
    edited February 2012

    Oh NO!! Ginger - I hope that you heal up quickly. Stomach flu is no fun regardless, so I can only imagine how miserable you must be. I had a coughing fit a few days ago and came out of it in pain.

    I don't know my Ki67 score or my %ER+, but I'm pretty sure it's quite low. I was first told I was ER- and  PR+ but that was later revies to weakly ER+ and PR+. My MO actually looked at slides with a pathologist to see that I was indeed ER+. I kind of wish I knew these, but they don't seem to be in the report I received either from genomic health or the pathology report from the surgery, I may see if I can get these specific results too.

    I also survived my first week back at school and other than being tired, I'm OK. Getting anything done is harder, my focus was crappy, but I did it, and have at least some stuff planned for next week too.

    I hope you all have a lovely weekend.

    -Judy

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  • Moderators
    Moderators Member Posts: 25,912
    edited February 2012

    sandracb, this section of the main Breastcancer.org site, When Is Radiation Appropriate? details the circumstances that may lead to a radiation reccommendation. You might want to check the Radiation - Before, During and After forum too, for community members who can share their own experiences with rads.

    Your mother must be so thankful to have you researching and advocating for her.

    Judith and the Mods

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  • faithhopenluv
    faithhopenluv Member Posts: 323
    edited February 2012

    Kam170 - my ki67 score was 'unfavorable' so i think my dr considered that even before it was found in the node. At the time I was a grade 2, the final pathology bumped to a grade 3. I know the waiting for results is so hard. When is your apt? I am BRAC2 + also, I knew my dr had my results but the nurse wouldnt give it to me over the phone until she talked to him. After begging, she talked to him the next day and was able to telll me it was positive but he wasn't available to discuus it. I could make an apt 4 days later - which was the day before my scheduled lumpectomy.

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  • CarolAnn6
    CarolAnn6 Member Posts: 44
    edited February 2012

    Me and my tissue expander went dancing last night! I am sore now, but it was so worth it. I worked a full week and celebrated with dinner out with my DH and listening to music. Danced to a few songs and it wore me out. So fun. Now back to the grind of weekend chores.



    Ginger!! I hope you feel better soon!



    CookieMonster - good luck with weight watchers and reaching your goals. Would love to keep hearing about your progress.

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  • Bogie
    Bogie Member Posts: 286
    edited February 2012

    Kam, I don't know the Ki67score was, but Oncotype was a 7 and I'm a high grade 3 invasive.



    7-8 weeks post op and the side where lymphnodes were removed is getting very tight under my arm pit with a pulling. I am watching for cording and just keep stretching out my arm as far as I can in different directions. Any other suggestions? Trying to avoid lymphadema, and checking into foot blood draws to lower the risk even further.



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  • QuinnCat
    QuinnCat Member Posts: 3,456
    edited February 2012

    Bogie - I developed cording (AWS Axillary Web Syndrome) after my SNB. I had that surgery before my BMX. I went to a local PT, not really trained in LE or AWS, so that might be the best route, but I felt I really got almost immediate relief from the pulling sensation in my arm by doing lymph self-message.



    Lymphatic Self-Massage Tutorial for Lymphedema. Lindsay Davey Toronto physiotherapy



    If link below isn't exactly right try searching words above.

    http://www.youtube.com/watch?v=Q9FP6AHj9Eo&feature=youtube_gdata_player

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  • goldlining
    goldlining Member Posts: 1,178
    edited February 2012
    Kam170 thanks for that the name info. I may try to look up that physio as I live in Toronto not unreasonably far from there. I don't have arm issues, but some swelling around the flap on the side previously having 2 nodes out.
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  • Bogie
    Bogie Member Posts: 286
    edited February 2012

    Kam, I did meet with a PT before this and forgotten to ask about cording or AWS. I was taught the manual drainage arm massaging. It helped somewhat but seems the far stretching helped more, just hope that doesn't compromise anything.



    Thanks for the link!

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  • Blessings2011
    Blessings2011 Member Posts: 4,276
    edited February 2012

    Ginger - how are you feeling today?

    I got that awful stomach virus a few weeks ago - UGH! It took me a full week before I wasn't feeling queasy every day.

    Gentle hugs to you!

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  • Ginger48
    Ginger48 Member Posts: 1,978
    edited February 2012

    Blessings- I am doing better. Thanks for asking. I am not sure if it was actually the bug because everyone else who has gotten it has been much more violently sick than I was and for a much longer time. I swallowed some supplements on Wednesday morning and felt like something got stuck in my esophogus or scratched it and it has bothered me since then. On Thursday night, it was very painful to swallow dinner and on Friday I could not get my lunch (stirfry) to go down. I came home and had some broth and then I threw up. Now I do not have the stuck feeling anymore so not sure if I dislodged something while vomiting or if it was the bug. I am just taking it easy and hoping that is the end of it. Sorry for the long post...

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  • Blessings2011
    Blessings2011 Member Posts: 4,276
    edited February 2012

    Ginger - if you get that feeling again (something lodged in your esophagus) please contact your doc ASAP.

    I get pills stuck in the back of my throat all the time because I am so lazy I take them all at once. The little tiny Elavil pills burn like the dickens before I cough them out! Then I have to go out and eat a piece of bread (o.k., a Hawaiian roll) to make sure nothing else is stuck.

    But I do remember that tightness in my throat many years ago, and for me, it was a symptom of a hiatal hernia. For my niece, it's a narrowing of the esophagus that requires stretching on occasion.

    And not to sound alarmist or anything, but remember, as women, our heart attack symptoms are different than mens, and can present as indigestion or nausea. A nurse once told me that the biggest symptom of heart attack in women is denial.

    Just take good care of yourself!!!!

    And hoping you feel better every day.

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  • Ginger48
    Ginger48 Member Posts: 1,978
    edited February 2012

    Blessings- lol at the Hawaiian roll. I am gluten free so that won't work for me. I am guilty of swallowing multiple pills at once too. I will call the dr if it happens again. Thanks!

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  • gabe2011
    gabe2011 Member Posts: 33
    edited February 2012

    *sigh* Moon you were right. I wound up with an infection and fluid build up on the lft side after going back to work last week. I had to go yesterday and have antibiotics and an ultrasound to place a drain back in on the left....BLAHHH! Back to no driving, no showering, no lifting, sleeping in the recliner....Oh well at least Ihad one week of relative normalcy....although what is normal anymore.

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  • spunkyboobster
    spunkyboobster Member Posts: 738
    edited February 2012

    Hello All- Wondering if any of you have any experience with what I'm looking at-Blood test says I'm post menopause, but I'm still getting my period, so no definitive call on if I'm pre or post meno. Onc says it up to me to choose Femera with Lupron injection or just Tamox. I'm driving myself crazy going back and forth between the options. I'm ready to take a pass entirely. Any ideas, opinions or experiences much appreciated.

    Thanks!

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  • CookieMonster
    CookieMonster Member Posts: 1,035
    edited February 2012

    Kelly - my MO made the non-Tamox option sound so unappealing to me. But I'm definitely pre-menopausal so I'd need Lupron, AI and one other thing, I think she said. Clearly, I opted for Tamoxifen.

    Good luck with your decision.

    -Judy

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  • Bogie
    Bogie Member Posts: 286
    edited February 2012

    Spunky, I had the blood test as well to determine. It was on the fence however I have stopped periods my Oncotype read the test results and reviewd them with my gynecologist to determine if I should go ok Tomoxifen or Arimidex, the Arimidex won. Hope this helps, discuss with Gyne.



    I'm still fighting insurance on getting certified person to do blood work other than in my arm. no Quest labs has one person who is trained to do blood draws on anything other than the arm! This is crazy!



    Have these people never heard of lymphadema?

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  • Ginger48
    Ginger48 Member Posts: 1,978
    edited February 2012

    Kelly- I agree you should make the decision with your dr. That being said, I am on Femara and just starting getting joint pain and am back to bad sleep after 6 weeks on it. Definitely unappealing. I am hoping it will level off because this really sucks! Does this make Tamox sound better? Not sure if it has the same SE as AI.

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