Has anyone started a forum for Chemo in Dec 2008?

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  • Firni
    Firni Member Posts: 1,519
    edited November 2009

    I know.  I couldn't believe it myself.  I saw Dr. Love on the evening news today and SHE AGREED WITH THE NEW GUIDELINES!!!!!!  She said younger women's breasts are too dense to really show anything anyway and it doesn't make sense to waste the money doing mammos and biopsies. She said the new guidelines are more in line with European ones.  I've never been a huge fan of hers but wow, she just blew me away tonight.  

    When I think of all the young women on this site with small children who might never have found their cancer if the new guidelines were in place, it breaks my heart.  Have you read Dr. Weiss's point of view at the link below?  The points she made about the task force justifying a 3% increased death rate for BC to save some money, just made my blood boil.

  • EleanorJ
    EleanorJ Member Posts: 752
    edited November 2009

    I can't believe they had the guts to go on Good Morning America to talk about this. That lady just survived BC, I'm sure she can't be for it! Horrible!! There goes national health care for you!

  • Texas357
    Texas357 Member Posts: 1,552
    edited November 2009

    I'm listening to a debate now on ABC. Susan Love is saying mammograms don't catch cancer very much in women under 50 because of their breast density, and the increased radiation is a health risk. She's saying the issue isn't whether women get breast cancer or not below age 50, it's whether mammography is helping to find the cancer.

    I don't know if I agree or not, since mammography missed my cancer until I hit age 52.

  • Firni
    Firni Member Posts: 1,519
    edited November 2009

    So, if the mammograms aren't doing it for younger women, why aren't they getting ultrasounds?  those pick up a lot more than mammograms and there is no radiation to worry about.

    Dr. Love proposes that there should be a better test for younger women but until then what else is there?  Are younger women supposed to just assume they're healthy until age 50? 

  • EleanorJ
    EleanorJ Member Posts: 752
    edited November 2009

    Yep! I think ultrasounds would be very time consuming, think about it how long it would take to perform complete U/S of both breast. The problem is that mammo do not pick up ALL cancer, MRIs don't pick up ALL cancer & U/S don't pick up ALL cancer. No screening tool is perfect but right now mammos is the only one insurance will pay for. MRIs are known for better results in dense breast which younger women tend to have. It's definately raising an issue but I think they should start discussing other screening tools. How about alternating between all 3? That way, every 3 years, you get a different type of screening.

  • Firni
    Firni Member Posts: 1,519
    edited November 2009
    Well, I think for some women US might take a long time to do both breasts.  In my case, it wouldn't have taken much time at all. Frown  Since it seems that the ultimate goal here is to save money, I doubt anyone would agree to alternating tests.  Especially the MRIs.  Did you know that this panel is also recommending that women don't do self exams anymore?  Dr. Love said most women don't even know the correct way to do one and don't find anything anyway.  I did see on the news this morning that the insurance companies aren't going to change anything right now so they'll still pay for yearly mammos from 40 years of age and up.  At least for now.  This is a sickening dilemma even tho I don't have breast tissue anymore.  I just think that too many women will find out too late under these new guidelines.
  • swest
    swest Member Posts: 680
    edited November 2009

    I am the of 1900!  I found my lump with SBE at 42.  Because my OBGYN had me start mammograms at 38 for a baseline they were able to diagnose me early (Stage I) and saved my life.  My cancer was triple negative and grade 3.  No doubt, if I'd waited to 50 I'd be dead.  BTW, I had no family history of BC.

    I am OUTRAGED!!!!!

  • CindaD
    CindaD Member Posts: 120
    edited November 2009

    I too found my cancer myself, I just turned 45, and I believed I saved my life. I have also worked with a breast cancer surgeon for years.  I have had the opportunity to see for myself what screening and technology can do for women.  Years ago everyone had a mastectomy and an axillary dissection, there was no other choice. The cancers were very large. Many of the women had mets, it broke my heart.  Now we are finding these cancers at an earlier stage, usning SN bx, oncotyping, many women have a choice as to what type of surgery they will have. It took years to get to this place, YEARS and YEARS. I've witnessed it and it is also what saved my life.  The government is SCREWING US and our DAUGHTERS!

  • havehope
    havehope Member Posts: 503
    edited November 2009

    I also found  the lump myself. I will teach my daughter self exam regardless of what the government will decide. As soon as she turns 16 I will take her for thermoscan. The insurance does not pay for it now but maybe in 3 years they will. 

  • Bold
    Bold Member Posts: 692
    edited November 2009

    I found my lump myself too. I did not have a mam. for 2 years prior. Just what they say you should after 50. As a result of that I am a stage 2a and 3.3cm. So if I had of gone my YEARLY they would of caught it smaller. Soooooooo....

  • Texas357
    Texas357 Member Posts: 1,552
    edited November 2009

    My cancer was found at age 51, after 12 years of mammograms I was already stage 3 by the time the mammogram found it.

    I was told that because my breast tissue was so dense that manual exams were useless. The mammogram could detect microscopic cancer that couldn't be felt. My doctors (I moved around and had several gyns) all believed that mammograms were better than SBE.

    So I had a false sense of security for years while the cancer was growing.

  • rayhope
    rayhope Member Posts: 228
    edited November 2009

    Texas,

     All of the doctors have told me that mammograms usually don't detect ILC.  In my case, I went to the doctor for an inverted nipple in December 2007.  I had a mammogram and ultrasound that showed nothing; both tests were repeated in 6 months, still showed nothing.  Radiologist ordered mri which showed nothing.  In October 2008, I went to surgeon with palpable lump.  He removed it, and pathology came back with DCIS.  I was advised to get a mastectomy because they weren't able to get clean margins.  The pathology report from the mastectomy showed a 4 CM ILC TUMOR which had not shown up on any of the screening techniques.  It was a huge surprise to both me and the breast surgeon.  I guess that's why they call ILC the "sneaky" cancer.

  • Firni
    Firni Member Posts: 1,519
    edited November 2009

    Texas and Rayhope,  I had a similar experience with my ILC.  My dr. felt a small lump that showed up on the mammo.  When I had the biopsy done, it came back with ILC that never showed up and DCIS which was the small lump.  It was no bigger than a grain of rice.  I could not feel it.  I had an MRI which did show the ILC which was wrapped around the DCIS but not the other two areas of DCIS that were present in a different quadrant.  Those other two areas of DCIS weren't discovered until after the mast.  My BS was so happy that I decided to have the mast.  Without my dr's skill and that rice sized DCIS, I still wouldn't have been diagnosed.  I wonder if ILC ever shows up on US?

  • Texas357
    Texas357 Member Posts: 1,552
    edited November 2009

    Yes, that's one of the issues. Who knew about ILC before they were diagnosed? Women aren't informed about what mammograms can/can't detect. As I said, it's a false sense of security.

  • Mandy1313
    Mandy1313 Member Posts: 1,692
    edited November 2009

    The panel has basically decided that there is no need to screen women who are under 50, without a family history or other risk,  unless they have symptoms--but if there are no breast exams and no mammos, how will they know what the symptoms are.  I don't understand it. 

  • swest
    swest Member Posts: 680
    edited November 2009

    Have a HAPPY THANKSGIVING EVERYONE!  I love where I am this year!!!!  So much to be thankful for!

    Sonia

  • Firni
    Firni Member Posts: 1,519
    edited November 2009

    The same to you Sonia and all the December Divas!!  We do have so much to be thankful for this year.

    I am scheduled to have nipple recon done on Dec. 10.  I went back to the PS whose recon involves the pencil erasures and pepperoni.  I told him I didn't want the gortex and I didn't want just tattoos.  So, would he do a flap nipple recon for me.  He said yes.  Didn't even pause or try to argue with me.  Just said yes.  He said he could also do the areola tattoo at the same time.  I told him it doesn't look like he uses any artistic flair with them so I didn't know if I wanted him to do the tattoos.  He told he that he does use a "stamp" but he could do some artistic embellishment for me too if I want to go ahead and have the tattoos done.  After 16 months, I'm so excited to be to the end of the saga of the breasts.  And for that I am also thankful.

    Have a beautiful day tomorrow! 

  • havehope
    havehope Member Posts: 503
    edited November 2009

    Happy Thanksgiving everyone! I am thankful I am still here and better than last year.

  • Mandy1313
    Mandy1313 Member Posts: 1,692
    edited November 2009

    Happy Thanksgiving everyone. 

    Mandy

  • colleen1960
    colleen1960 Member Posts: 226
    edited November 2009

    Wishing everyone a very Happy Thanksgiving!!!  We have come a long way in a year and I am so very Thankful!!!Kiss

    Stay Well,

    Colleen

  • EleanorJ
    EleanorJ Member Posts: 752
    edited November 2009

    Wishing a happy & wondeful Thanksgiving to everyone. So much to be thankful for this year. I've been cooking all week, we're having hubby's family over for dinner. This is my first time hosting Thanksgiving, very exciting, especially since I get to pick the time we eat, 5PM :) Instead of noon! LOL!

    Firni, so glad that the plastic surgeon is willing to do what YOU want done. Glad you found the right one.

  • CindaD
    CindaD Member Posts: 120
    edited December 2009

    Hello Divas, you are all on my mind this month.....just think last year at this time we were preparing for our chemo journey....it seems like a million year ago, it seems like yesterday!  I'm planning on really enjoying myself this Christmas, I think I slept thru last Christmas!  I hope you all do the same!

    Firni, so glad you're not getting the pepperonies!  Now, whenever I order a pepperoni pizza I have to laugh!

    Enjoy life girls!

    Cinda

  • Firni
    Firni Member Posts: 1,519
    edited December 2009

    Cinda, I'm so glad you can laugh when you order pizza and not get grossed out!

    I had my first chemo on Dec 10th and my hair was gone by Christmas.  This year on Dec. 10th I'll be having my final recon surgery and I have a few inches of completely out of control hair.  How far we have all come in a year.   

    Enjoy the holidays this year Divas and your new lease on life. 

    Firn 

  • havehope
    havehope Member Posts: 503
    edited December 2009
  • Firni
    Firni Member Posts: 1,519
    edited December 2009
    Hey Divas!  I got a job!!!  After being unemployed for 1 1/2 years, it's great to be going back to work.  I'm actually going back to the place that fired me.  I know.  Seems weird.  I won't be doing the same job tho.  I'll be the director for the Alzheimer's building.  Tomorrow is my first day.  I start at 8 am and stay to do the support group at 7 pm.  I guess I'll be there till about 9.  Nothing like jumping into the thick of it on the first day.  They are being great about my having nip surgery on Thurs and needing next Tues and Wed morning next week off for Dr. appts.  (Surgery follow up and 6 month onc appt.)  Wish me luck.  A 13 hr. day just out of the gate might just kill me.Undecided
  • Texas357
    Texas357 Member Posts: 1,552
    edited December 2009

    Yahoo! That's great news Firni! Best of luck to you -- with your positive attitude you'll do extremely well.

    What a change for all of us from last year, huh?

  • EleanorJ
    EleanorJ Member Posts: 752
    edited December 2009

    Firni, that's great! Congrats on a new job. Hope you're having a great first day :)

  • colleen1960
    colleen1960 Member Posts: 226
    edited December 2009

    Firni:  Congratulations on the new job!!! Things are looking good.  10 hour day the 1st day back, rest when you can. 

    Hope everyone is doing well.  Things busy with me I am way to involved in the PTA this year (this is my last year in elementary school).  I think I took on to much.  But I like keeping busy.  Hope you are all doing well and getting ready to go thru the Holiday Season.

    Colleen

  • havehope
    havehope Member Posts: 503
    edited December 2009

    Firmi, congratulation and take it easy. 

    I hope everybody is ok. 

  • Mandy1313
    Mandy1313 Member Posts: 1,692
    edited December 2009

    Firni: Wonderful news about your new job!!!

    This year my older daughter can't come home for the holidays. So we are bringing home to her in San Francisco and on December 23, my husband, younger daughter and myself will get on a plane and be on the West Coast for a week.  Last year I was scheduled for chemo on December 23.  It's been a long trip!!!

    To all o fyou, have a wonderful holiday season.

    Hugs

    Mandy

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