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3wishes View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 3wishes Quote  Post ReplyReply Direct Link To This Post Posted: Apr 18 2013 at 9:40pm
Hi Mindy,
I'm new here what does NED and BSO mean?
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Post Options Post Options   Thanks (0) Thanks(0)   Quote mindy555 Quote  Post ReplyReply Direct Link To This Post Posted: Apr 19 2013 at 6:53pm
Hi 3wishes ;)

NED means no evidence of disease

A BSO is the abbreviation for a procedure called a bilateral salpingo-oophorectomy.  In simple terms it means removal of both ovaries and tubes.  It was advised I have this procedure done as a prophylactic measure.  I'm at high risk for ovarian cancer since I carry the BRCA 1 mutation.

Please let me know if you have any other questions... and take care!
Dx July 2011 56 yo
Stage I IDC,TN,Grade 3
Grew to Stage IIa- No ev of node involve- BRCA1+ chondroid metaplasia
Daughter also BRCA1+
Mass grew on Taxol
FEC 6x better
BMX 3/19/12 pCR NED
BSO 6/2012
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Post Options Post Options   Thanks (0) Thanks(0)   Quote mindy555 Quote  Post ReplyReply Direct Link To This Post Posted: Apr 19 2013 at 7:41pm
Sorry to have my head up my tush.  We DO have an Alternative Therapy section now.  DUH.  This seems to be a good place to discuss complimentary therapy also.

What's my name again?

xxx
Dx July 2011 56 yo
Stage I IDC,TN,Grade 3
Grew to Stage IIa- No ev of node involve- BRCA1+ chondroid metaplasia
Daughter also BRCA1+
Mass grew on Taxol
FEC 6x better
BMX 3/19/12 pCR NED
BSO 6/2012
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3wishes View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 3wishes Quote  Post ReplyReply Direct Link To This Post Posted: Apr 19 2013 at 9:18pm
Thank you.  I am so overwhelmed and totally consumed by all this. It's just so hard to take it all in.
dx2/14/2013 age 59 3mm tnbc no nodes testing for braca pending treatment
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Grateful for today View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Grateful for today Quote  Post ReplyReply Direct Link To This Post Posted: Apr 20 2013 at 12:34am
3 wishes,

Glad you found this site. There are a lot of caring and knowledgeable women and men here.
Many/if not most feel overwhelmed at the time of initial diagnosis. You are so right......there is
so much information.
Sloan-Kettering website has some excellent videos on "Support for the newly diagnosed"
http://forum.tnbcfoundation.org/support-for-newly-diagnosedvideos_topic9641.html

Be careful when reading TNBC (triple negative breast cancer) information on this site and elsewhere.
Why?    You are in a small group of women with very small tumors.
With a 3mm tumor, you have a very small TNBC tumor. Many TNBC tumors that are found are larger.   Would suggest whenever you post a question, you emphasize your tumor is 3mm (not 3cm) just to be sure we all remember you have a very small tumor. Noticed you did include the 3mm in your signature.
You may like to consider a thread with your questions.......maybe a thread titled "3mm" or whatever you choose.

You may find an article by Lisa Carey, MD , a TNBC expert, encouraging in relation to your small tumor
size. Link: http://www.cancernetwork.com/conference-reports/mbcc2013/content/article/10165/2131856

The thread http://forum.tnbcfoundation.org/tnbc-info-on-this-website_topic10166.html
has some links to other threads which may be helpful to someone newly diagnosed.

When it comes to abbreviations on the forums, you might find the thread................
"Abbreviations on the forums" helpful:
http://forum.tnbcfoundation.org/abbreviations-on-forums_topic9524.html

You have in your signature that BRCA pending. Hopefully, you have seen both a surgeon and
oncologist that have treated many TNBC patients.........and they have explained the pros and cons
of all your options.


With caring and positive thoughts,
Grateful for today.............Judy



Edited by Grateful for today - Apr 20 2013 at 12:36am
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 3wishes Quote  Post ReplyReply Direct Link To This Post Posted: Apr 20 2013 at 9:37am
Thank you Judy. I understand completelywhat you are saying as is what I am finding in reading everything.  Although my tumor was small is was nottingham graded a 6 out of 9 grade 3 which makes it unusal.  I wish I could find more information on my particular situation.  Do you know of anyone who choose no treatment or choose Iscador?  Also I have read alot about bio-identical hormone replacement...I have been reading so much my head hurts.
dx2/14/2013 age 59 3mm tnbc no nodes testing for braca pending treatment
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Grateful for today Quote  Post ReplyReply Direct Link To This Post Posted: Apr 20 2013 at 12:53pm
3 wishes,

I am not familiar with the use of Iscador for breast cancer.
Think I would discuss the use of Iscador with my oncologist and maybe even ask to get the opinion
    of "Integrative Oncologist" who are sometimes at the NCCN Cancer Centers
Thank you for asking a question about Iscador as some of the articles found were interesting.
    Some of the articles were older and involved other types of cancer not breast cancer.


A few references/resources related to Iscador:
(Viscum album L. extracts (VAE, European mistletoe)
From MSKCC: Mistletoe (European)
       Scientific Name     Viscum album, Viscum coloratum
       Common Name     Viscum, all-heal, birdlime
       Brand Name           Helixor®, Iscador®, Iscador Qu®, Lektinol™, Eurixor®, Abnoba-viscum Quercus


First and foremost:   A discussion with your oncologist and/or Integrative Oncologist.

NCI information on mistletoe
http://www.cancer.gov/cancertopics/pdq/cam/mistletoe/HealthProfessional/page5

From Breastcancer.org. Refers to European use. http://www.breastcancer.org/tips/nutrition/ask_expert/2007_07/question_14

From Memorial Sloan Kettering website: Mistletoe (European)
with WARNING: Mistletoe berries and leaves are highly poisonous - more than 2 berries or 3 leaves can produce toxic effects.
The references include a 2012 article with most other article not within the past few years.
http://www.mskcc.org/cancer-care/herb/mistletoe-european

Efficacy and safety of mistletoe preparations (Viscum album) for patients with cancer diseases. A systematic review.   (Authors: Germany/Switzerland, 2009)   "there remains controversy about its clinical role"
http://www.ncbi.nlm.nih.gov/pubmed/19729932

Safety and effects of two mistletoe preparations on production of Interleukin-6 and other immune parameters - a placebo controlled clinical trial in healthy subjects.   Germany, 2011
http://www.ncbi.nlm.nih.gov/pubmed/22114899

Viscum album L. extracts in breast and gynaecological cancers: a systematic review of clinical and
preclinical research.   (Germany, 2009)
http://www.ncbi.nlm.nih.gov/pubmed/19519890


My post is based only on a brief Google Scholar search.   
Any member who is knowledgeable about mistletoe extracts, please add any important information
   that should be included in a discussion of mistletoe extracts......and/or any corrections to what I
   have posted.


With caring and positive thoughts,
Grateful for today.........Judy
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arabella View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote arabella Quote  Post ReplyReply Direct Link To This Post Posted: Apr 20 2013 at 1:06pm
I know nothing about this, but mistletoe is what Suzanne Somers used a few yrs. back in treating her BC I think because that's when I first became aware of it.

Kaye
Dx TNBC 1/2013; age 63; 1.1 cm; Stage 1, Grade 1(?); lumpectomy clear margins; ALND -; severe SEs to first TC and treatment stopped; radsX25; BRCA -
Recur 6/2015 Mastectomy
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Post Options Post Options   Thanks (0) Thanks(0)   Quote arabella Quote  Post ReplyReply Direct Link To This Post Posted: Apr 20 2013 at 3:18pm
You got my curiosity going about mistletoe....the following was informative for me:

Dx TNBC 1/2013; age 63; 1.1 cm; Stage 1, Grade 1(?); lumpectomy clear margins; ALND -; severe SEs to first TC and treatment stopped; radsX25; BRCA -
Recur 6/2015 Mastectomy
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Post Options Post Options   Thanks (0) Thanks(0)   Quote annafriday Quote  Post ReplyReply Direct Link To This Post Posted: May 13 2013 at 1:14am
Mindy,

I am a newbie but am very interested in complimentary, holistic, alternative therapies! I watched Cancer the Forbidden Cure on You Tube...very good its about 1.5hrs. But wish I could talk to more people who have done this and had good results..especially since Big Pharma wont allow nearly enough clinical trials on these things! Any suggestions etc would be greatly appreciated. I did 2 iv vitamin c infusions before surgery and felt better. Im taking lots of herbs and supplements and feel like they prevented my disease from further progressing to lymph nodes given the large size of my tumor.

Thanks,

Anna
DX:3/20/13 right breast multifocal stage 3a TNBC. Bilateral Mastectomy 4-18-13 largest tumor 6.2cm. 1 microscopic sentinal node positive. KI-67 77%. ACx4..doing Taxol now x12 weekly.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote TammyToes14 Quote  Post ReplyReply Direct Link To This Post Posted: Sep 12 2021 at 3:17am
Hi does anybody know a diet or specialists in diet as an alternative treatment to adjuvant chemo. My mom is already battling multiple sclorosis and chemo is not looking like it is a good option for her quality of life. She's already had a mastectomy, margins were clear and nodes as well but lymphvascular invasion was found. Trying to prevent reocurrance or naturally fight anything possibly still somewhere in her body. We don't want to help it come back or find a new home. Thank you
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Post Options Post Options   Thanks (0) Thanks(0)   Quote CMDW Quote  Post ReplyReply Direct Link To This Post Posted: Sep 16 2021 at 1:51pm
i am sorry your mom (and you) are going through this.  If budget allows, I would find an integrative medicine doctor specializing in oncology.  I saw one throughout my treatment and he helped me tremendously.  These specialists are not covered by insurance, but can be well worth the time and (relatively small) expense.  They address diet, supplements and exercise, as well as getting a patient introduced to yoga, acupuncture, therapeutic massage, essential oils, meditation, etc.  I did not avail myself of all of those things, but they were available.  I did not have to purchase anything through his office.  Sometimes the oncologists can recommend an integrative medicine specialist since oncologists generally do not have time or necessarily the knowledge to address these topics.

As has been mentioned before, studies have shown it’s important to keep vitamin D levels in the normal range.  There are many cancer fighting foods-too many to mention here, but perhaps you could get a book or two from you local library.

Of course, the things mentioned here are not a substitution for chemo.

Best wishes to you and your mom.
Cindy
66 at diagnosis. 3/2019, AC/T, lumpectomy, 30 radiation. Complete 12/19. IDC, grade 2-3, 4 cores .2-1.5cm, yellow lobulated fibroadipose, stage pT1b, NO
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Post Options Post Options   Thanks (0) Thanks(0)   Quote TammyToes14 Quote  Post ReplyReply Direct Link To This Post Posted: Sep 21 2021 at 1:29am
Thank you soo much Cindy we will ask about that. I truly appreciate your response. 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote TammyToes14 Quote  Post ReplyReply Direct Link To This Post Posted: Sep 21 2021 at 1:30am
How are you doing?
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Post Options Post Options   Thanks (0) Thanks(0)   Quote CMDW Quote  Post ReplyReply Direct Link To This Post Posted: Sep 21 2021 at 9:52am
As far as I know, I am doing okay!  Completed chemo two years ago.  I have chin length hair now, and see my oncologist quarterly.  Mammogram only once a year.  I do fret about recurrence as I have scar tissue in the affected breast which makes it difficult to tell if there is a mass.  That breast also is tender/sore at times even though lumpectomy was performed almost two years ago.

I was 66 at time of diagnosis and am 69 now.  I’m grateful for each day and hope for many more!  I wish the same for you and your loved ones.  Cindy
66 at diagnosis. 3/2019, AC/T, lumpectomy, 30 radiation. Complete 12/19. IDC, grade 2-3, 4 cores .2-1.5cm, yellow lobulated fibroadipose, stage pT1b, NO
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