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First Time Posting

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Forum Name: Welcome New Members
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Topic: First Time Posting

Posted By: luvnlife
Subject: First Time Posting
Date Posted: Feb 20 2011 at 12:22am

Hi Everyone,

This is my first time posting so I do not know how to put my diagnosis at the bottom of my post.

Here is a summary of my journey as of today - found lump in left breast 12/12/10; went to my gyn on 12/13/10; mammogram and ultrasound 12/15/10; met with surgeon 12/16/10; biopsy 12/17/10; diagnosed 12/21/10 - triple negative, stage 1, grade 3 invasive ductal carcinoma; met with oncologist on 1/3/11; bone scan 1/5/11; lumpectomy and node dissection 1/26/11 - 1.1 cm x 1.7cm tumor, 1/2 nodes positive re-classified as stage 2; port surgery 2/15/11; ordered cranial prosthesis (wigs, just like using the medical term) 2/17/11; start TAC chemo on 2/21/11 (will be receiving 6 treatments every 3 weeks); radiation to follow. There have been numerous other visits and/or conferences with doctors and such but I just gave the highlights so to speak.

It has been a whirlwind of events, emotions and uncertainties. Not sure how I really feel about everything. Everyone keeps telling how upbeat I am, how well I am handling it all and such, but I think it is all mainly because I don't know how to act. My husband, children, family and friends are for the most part taking it pretty hard. It seems that I am the one who ends up consoling everyone - letting them know that everything is ok and that I will be all right.

Every day brings a new discovery, a new 'guess what now" event and a new emotion. I can't really say I am scared, it is a more of a "WTF" feeling (I greatly apologize if anyone finds this comment offensive and please believe me that is not the intent). I know that God has everything under control and has a plan, I just wish I had a better insight into it all. It is as if I have been living the last two months in fog or dream-like state.

I appreciate the opportunity to share, unload or whatever you want to call it. I have been reading the posts over the last couple months and finally decided it was time to come out myself, so here it goes: Hi, my name is Michele and I have breast cancer. I am 53 and there is not a history of breast cancer in my family. So I decided or realized tonight, the people who post here are my family and I think that is what I need most. A family who understands what I am going through.

Thanks for being here and listening.

Replies:

Posted By: snugltz
Date Posted: Feb 20 2011 at 12:55am

Welcome, but so so sorry that you have to be here. I am still in a fog and I was diagnosed in May of 2010. I was very upbeat until the chemo started. I guess reality set in at that point. The people here have been absolutely wonderful and so helpful. It is nice to have people who understand my fears and pains. And boy I too wish I had a better insight into Gods plan.

-------------
1 cm, 0/2 neg nodes, lumpectomy 6/16/10, cytoxin/taxotere 4x every three weeks, rad start 11/8 33X

Posted By: zoomommy2
Date Posted: Feb 20 2011 at 1:08am

Luvnlife,

We all know the fog you feel you have been in. We are your family. We all understand as no others can. We will be here for whatever we can help with. I was always the strong one in the family, always looking straight ahead, never looking to the left or right or behind me. That carried me through diagnosis, mastectomy, chemo, emergency surgery and reconstruction surgery. Then I fell apart. Only for a short time, but it was a long time coming. Don't feel you have to be strong all the time. There was no history of breast cancer in many of our cases. It's frequently not genetic, but it can be. Best of luck with your upcoming chemo.

Lee in Denver

-------------
dx6/09,stageII,gr3,(L)mastectomy 7/09,ACx4,Taxolx7,Avastin study,gall bladder surgery 1/10,4/11 Stage 4, mets to lung, 4/11 Started Taxotere and Xeloda, 5/11 Taxotere stopped, off Xeloda

Posted By: Falcon
Date Posted: Feb 20 2011 at 1:43am

Hi Michele,

My daughter was dx Dec 15, 2009 at the age of 32 Just after the birth of her second child this web site has been a great place to receive support and wisdom from so many.

I will be keeping you in prayer for the gift of healing stay strong and believe that God can and will heal you!

Susan

-------------
My daughter Jessica
Treated and Healed!!!!!

Posted By: 123Donna
Date Posted: Feb 20 2011 at 2:21am

Hi Michelle and welcome. I think we all know what you're feeling and experiencing right now. The fog is normal. I felt (and still do) that all of this is so surreal, kind of like an out of body experience. The hardest part is realizing this is the new normal for us and accepting what we must endure to fight this disease.

You seem to have educated yourself about this bc and this disease, which is helpful. Stay strong but allow others to help too. When we've been the caregiver for so long, it's hard for us to ask others for help or show our weaknesses. All of us on this site get it and understand. We're here for you and will help you on this journey.

To get your information so that it appears at the bottom of your posts, go to the upper left side of the screen and click on Member Control Panel. Go to Edit Profile and scroll down until you see Signature. Type your information and go to the bottom of the page and Save/Update profile.

Donna

-------------
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

Posted By: poppet75
Date Posted: Feb 20 2011 at 8:59am

Hello All from the UK!

I'm from Manchester England and have found this site via a friend, as far as I know there is nothing like this in the UK for TNBC and I'm pleased to have found it.

I'm presently being treated for a regional recurrence (lymph note mets and celll activity in auxillary) only 7 months after finishing treatment for my original dx. I'm 36 and never thought this could happen to me but I guess that is what we all think. I'm on Gemzar/Carboplatin and feel quite poorly during treatment (3 cycles to date) and I'm due for a scan after my next cycle to see if I'm responding to it (had 2 x cycles of Abraxne intially but had progression on it) suffering with headaches, stomach and bone pains so unsure if this is side effects of chemo or whether its an indication of further spread, the scan will obviously determine what is happening. When I have my break between cycles I feel strangely well although the fatigue is something I battle with on a daily basis.

I'd like to hear from anyone who can offer advice and support.

-------------
DX June 09 WLE 4/11 nodes affected followed by MX Chemo & Rads. Recurrence Oct 10 lymph node mets presently undergoing more Chemo scan soon to determine if further spread

Posted By: 123Donna
Date Posted: Feb 20 2011 at 11:20am

Hi Poppet75,

I'm glad you found us, but sorry you have a reason to be here. I just completed my 3rd cycle of Carbo/Gemzar and having problems with fatigue too. Please keep us posted on how you're doing and the results of your next scan.

Donna

-------------
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

Posted By: Charlene
Date Posted: Feb 20 2011 at 12:09pm

Hi, Michele, Luvnlife,

I don't know if it helps, but I know what you are going through and I will be thinking of you tomorrow. There is a light at the end of the tunnel. Try to have some fun and enjoy life as much as you can even during chemo. There will be some times you won't feel like it, but there will probably be some very "normal" days in between treatments, too. Radiation is not much to worry about, much easier than chemo, I thought. I wish you the best.

Charlene

-------------
DX 3/10 @59 ILC/TNBC
Stage 1, Grade 2, Multifocal; Lumpectomy/re-excision
SNB 0/4 nodes, BRCA-; Taxotere/Cytoxan X4, 30 rads
3/14:NED

Posted By: DawnP
Date Posted: Feb 20 2011 at 12:55pm

Welcome Luvinlife! I'm still in a bit of a fog too! I went through that whirlwind last May for diagnosis and surgery and then on..... I have a recurrence found last month and have now began chemo again. So, the "fog" continues! There's lots of living to do in-between! Stay positive and may God heal you.

-------------
DX 4/10 4.5 cm lump 5 of 14 nodes positive Had bilat mast chemo (AC&Taxol) and Radiation. Clear PET scan 10/10. Recurrence in 3 nodes 1/11. Starting Carboplatin & Gemcitabine.

Dawn

Posted By: Lillie
Date Posted: Feb 20 2011 at 2:45pm

Dear Michelle,
brain fog, happy-go-lucky for now, ying/yang, zig/zag, up/down, etc. Sounds normal to me for a newly diagnosed breast cancer (triple negative) girl. You hit it on the head, in the beginning we don't know how we are supposed to act.

I'm glad you found this site and there is a wealth of knowledge, understanding and support here. I see Donna told you how to get the info into your signature line.

I'm from NC too. I'm also (almost) a 5 year survivor. Please be encouraged by that fact. You will have some rough days ahead, but keep posting and let us help and encourage you.

We also have a Spiritual Support thread if that is something you would be interested in. Last Friday I had a 6 month oncology follow-up and I was so covered with prayer by ladies on the SS thread.

God Bless,
Lillie

-------------
Dx 6/06 age 65,IDC-TNBC
Stage IIb,Gr3,2cm,BRCA-
6/06 L/Mast/w/SNB,1of3 Nodes+
6/06 Axl. 9 nodes-
8/8 thru 11/15 Chemo (Clin-Trial) DD A/Cx4 -- DD taxol+gemzar x4
No Rads.
No RECON - 11/2018-12 yrs NED

Posted By: Lillie
Date Posted: Feb 20 2011 at 2:50pm

Hello Poppet75,
I just wanted to welcome you to the TNBC site. Sorry any of us have to be here, but glad we are here for each other.

I have not had a recurrence so I cannot address that, but as you can see there are many ladies here offering all kinds of support.

I also extend an invitation to visit the Spiritual Support thread if that is of interest to you.

God Bless,
Lillie

-------------
Dx 6/06 age 65,IDC-TNBC
Stage IIb,Gr3,2cm,BRCA-
6/06 L/Mast/w/SNB,1of3 Nodes+
6/06 Axl. 9 nodes-
8/8 thru 11/15 Chemo (Clin-Trial) DD A/Cx4 -- DD taxol+gemzar x4
No Rads.
No RECON - 11/2018-12 yrs NED

Posted By: sue
Date Posted: Feb 20 2011 at 4:42pm

Welcome Poppet75.

Glad you have found this site. There are a lot of supportive, caring people here who are happy to help when they can, and share their stories or just listen when needed.

Hoping for the best for you.

Sue

-------------
Dx 7/10, age 53. TNBC left breast, stage I, grade 3, IDC 0.5 cm, DCI 2.5 cm, 0/8 lymph nodes neg. BRCA-. T/C x4 finished 2/09/11, rads x34 finished 4/21/11.

Posted By: sue
Date Posted: Feb 20 2011 at 4:46pm

Hi Michele,

You truly have found a family here who understands and cares about everything you are going through.

Hoping for the best outcome for you in the future as you fight this TNBC.

Sue

-------------
Dx 7/10, age 53. TNBC left breast, stage I, grade 3, IDC 0.5 cm, DCI 2.5 cm, 0/8 lymph nodes neg. BRCA-. T/C x4 finished 2/09/11, rads x34 finished 4/21/11.

Posted By: luvnlife
Date Posted: Feb 20 2011 at 10:16pm

Thanks for all the replys! I do feel like I have a support network that understands. I will let you all know how chemo goes tomorrow. My husband, Bill, was so cute tonight. He came to show me his clothes for tomorrow, pink shirt with a pink ribbon lapel pin (he found this afternoon as a surprise for me). He does make me smile.

-------------
TNBC, 53, Diagnosed 12/21/10, Lumpectomy w/Node Dissection 1/26/11; 1.1cm x 1.7cm tumor w/clear margins, 1/2 Nodes pos, Stage II, Grade 3 IDC L-Breast, 6X TAC every 3 weeks to be followed by Radiation

Posted By: luvnlife
Date Posted: Feb 21 2011 at 10:14pm

I had my first TAC chemo treatment today. The totally process took about 3.5 hours. I realize that it was my first of six treatments but it went well (I guess, I really don’t have anything to measure it by at this stage). I actually fell asleep several times. It is now 7 hours since the treatment and I’m feeling ok, taking precautionary nausea medicine and have only felt queasy a copy of times. I also feel a slightly shaky and my hands seem a little puffy, and have experienced a moment or two of dizziness (which could be a result of the anti-nausea medicine and the fact I have barely slept over the past few days). As suggested by my oncologist, I am drinking plenty of fluids and resting. I go back tomorrow after for my nadir shot to help boost production of white blood cells. I will keep everyone updated.

Thanks,

Michele

-------------
TNBC, 53, Diagnosed 12/21/10, Lumpectomy w/Node Dissection 1/26/11; 1.1cm x 1.7cm tumor w/clear margins, 1/2 Nodes pos, Stage II, Grade 3 IDC L-Breast, 6X TAC every 3 weeks to be followed by Radiation

Posted By: zoomommy2
Date Posted: Feb 21 2011 at 10:24pm

Michele,

I'm glad the first chemo went well for you. That's typical. We worry about it so much and then it's over with. Get plenty of rest and drink, drink, drink. You want to wash the chemo out of your system. It's done it's job now and needs to leave your body. Good luck with all your treatments.

Lee in Denver

Posted By: Falcon
Date Posted: Feb 22 2011 at 2:09am

Praying for you Michele and sending you hugs.

Susan

-------------
My daughter Jessica
Treated and Healed!!!!!

Posted By: 123Donna
Date Posted: Feb 22 2011 at 7:32am

Michele,

Here's a link to "Chemo Tips" put together by some of the members. If you get bone pain from the Neulasta shot, remember Claritin may help.

http://forum.tnbcfoundation.org/the-chemo-tips_topic3101.html - http://forum.tnbcfoundation.org/the-chemo-tips_topic3101.html

Donna

-------------
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

Posted By: luvnlife
Date Posted: Feb 22 2011 at 6:06pm

Went to work for four hours this morning, I had my stitches removed from chemo port surgery, met for a consult with my oncology radiologist and received my nadir shot. It has been a rather busy day. I noticed last night's post was full of mistakes (sorry about that - I guess I wasn't as on track as I thought I was, lol). Still waiting to see if nausea will sit in. When does it normally hit and how long does it stay around? I still feel a little queasy now and then, but that is all. I would also love insight into when the bone pain from the nadir will start and hopefully end.

Once again, I thank each and every one of you for letting me share.

Take care,

Michele

Posted By: Desaree
Date Posted: Feb 22 2011 at 6:44pm

Hi Michelle,

Glad to hear your first chemo went well. I just completed 9 months of chemo...and I must say I coped pretty well throughout. It is tough and I won't lie---I did have bad days, but I like to say it is "DOable." Be kind and gentle with yourself. Cry when you need to and then move on! Enjoy those good days. Take care of yourself on the bad days...sleep as much as you need to and drink lots of water. You'll get to the other side of doing chemo too.

Smiles,

Desaree

-------------
Dx@41 yrs 5/5/10,, Gem/Carb/Parp failed, quadrantectomy 8/13/10 Stage III, grade 3, 0/11 nodes+, DD 4AC-12Tax 9/8/10, Allergic Tax,Abraxane (10) start 11/22/10, finished 2/18/11+ 33 rads done 2/8/11

Posted By: zoomommy2
Date Posted: Feb 22 2011 at 7:43pm

Michele,

Are you taking Claritin for bone pain? I didn't know about it when I was on chemo. The pain would start the day after I took the first shot of Neupogen. You are getting Neulasta, right? The pain wasn't too bad, but you should be given pain pills if Tylenol doesn't help enough. If you are getting the right anti-nausea med, you should do fine. That's the wonder of the new way they treat chemo side effects these days. Typically you should feel fine the day of and the next day after chemo. I would feel worst on day 3-5 or 6. Then I'd gradually start to feel better. Everybody is different. I hope you do well.

Lee in Denver

Posted By: mary pat
Date Posted: Feb 22 2011 at 10:19pm

Hi everyone,

I am posting for my first time as well. Just would like a little feedback if possible. Iwas diagnosed with triple negative in 8/2009, had a lumpectomy and 4 rounds of chemo. I had taxatere and cytoxin, was ready for radiation and had some genetic testing and was told I had braca 1. A yr ago last month I had a bilateral along with tubes and ovaries removed. I am 49 and now asking myself what is next?? I have been told that I have done everything humanly possibe to prevent anything coming back due to the gene, however I still have to be concerned about the triple negative. I am always researching to see if I am a candidate for a trial, but cannot seem to find anything. Any thoughts??

Posted By: mary pat
Date Posted: Feb 22 2011 at 10:22pm

I forgotten to mention about this wonderful thing called"Menopause" I honestly think these hot flashed are worse than chemo. I was on effexor for the sweats, yes did help them subside a great deal with 20 plus lb weight gain in a yr. I started accupunture which seems to help the sweats alot and am weaning off the effexor. Any suggestions for this menopause???

Posted By: 123Donna
Date Posted: Feb 22 2011 at 10:55pm

Hi Mary Pat,

Welcome. It seems like you've done everything preventative due to the BRCA status. The worrying about recurrence is something we all fear with TN. Now the chemopause (menopause) is something else. Yuck!

Donna

-------------
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

Posted By: vander230
Date Posted: Feb 23 2011 at 12:37am

I am looking for the such sites for the general discussions on various topics.

Posted By: snugltz
Date Posted: Feb 23 2011 at 12:40am

I too felt ok the first day or two after chemo. Then it hit for about a week. Nausea was never much of a problem with the Emend. But I alternated between having to run to get to the bathroom and constipation. Lovely. And the Neulasta caused me much pain. I still have lots of pain four months afterward but it is getting a bit better. But I survived and know I did what I could to keep this cancer away, And do drink much water. I had to have IV fluids once, as I know others on here did.

-------------
1 cm, 0/2 neg nodes, lumpectomy 6/16/10, cytoxin/taxotere 4x every three weeks, rad start 11/8 33X

Posted By: outnumbered
Date Posted: Feb 23 2011 at 7:08am

Hi MIchele,

A belated welcome to the site, so sorry you have reason to be here. It sounds as if you are right on track. As I am sure you can already see, we are here for you for any questions or support you may need. Although you may have the most wonderful support system, nothing beats sharing with someone who has been there. We just GET IT a bit more than our loved ones. They try so hard, but its just not the same level of understanding.

-------------
~Sara

DX @ age 40 6/24/08 Stage 1 Grade 3 BRCA1+ 187delAG

BMX (nipple-areola-sparing) 8/5/08

Redo BMX (remove nipple and areola) w/ Lat Flap 7/6/09

BSO 9/3/09

NED since 08/05/2008

Posted By: outnumbered
Date Posted: Feb 23 2011 at 7:33am

Hi Mary Pat,

Welcome, so sorry you have reason to be here as well.

I have no wonderful words of wisdom, except to say I am in the same shoes as you. Surgical menopause BITES! (sorry if that offends anyone)

I had my ovaries out more than a year ago and went on the effexor right away. I started weaning off the effexor around Thanksgiving, and took my last one Jan 15 (my birthday)! I find that I do not have any increase in the frequency of the flashes, they are just more intense without the effexor. I have found that if I am a little dehydrated, they are worse. Also I flash more in stressful situations. So, I accept much less stress in my life, and I drink more water. And my water bill has gone up, because I take more showers.

I have gone from a woman who barely broke a visable sweat, to someone who who is always peeling off layers. I used to be very thin, almost perfect figure, no need to work out, to someone who gained 20lbs (in like 3 months) went up 2 sizes and has a bit more than a "J-LO" butt going on. The libido was an issue too, but I have found a middle ground with that (estring). Since going off the effexor, I have lost a little of the weight although I have to watch it VERY closely. I am pretty sure the weight thing has more to do with the menopause than the effexor.

Anyway, I just wanted you to know you are not alone out there. I am intrigued by the accupuncture. Is this accupuncture or accupressure? I may look into that. I think the key for me is a level of acceptance. It is what it is, I did what I had to do, and I accept it. The better I am with that, the less stress I have and the better I feel physically.

BTW, the fear of recurrance is another story all together. I just try and live each day accentuating the positive. That fear is like a spectre that follows me, but I will not allow it to encompass me. The more I am thinking of others, the less I tend to think of myself, and that seems to help.

XOXO

-------------
~Sara

DX @ age 40 6/24/08 Stage 1 Grade 3 BRCA1+ 187delAG

BMX (nipple-areola-sparing) 8/5/08

Redo BMX (remove nipple and areola) w/ Lat Flap 7/6/09

BSO 9/3/09

NED since 08/05/2008

Posted By: mary pat
Date Posted: Feb 23 2011 at 9:30am

Sara,

Thank you so much for your thorough response. It is accupunture I am receiving by a licensed accupuncturist. There is a difference between certified and licensed, certified only requires 300 hrs of study and licensed is 3 yrs. My accupunturist is also a M.D. I have had 4 treatments 2x weekly and feel so much better. I specifically said I want him to focus on the weight gain and menopoause. My insurance covers 6 visits with a co-pay of 10.00.

Do you know if there is going to be another tnbc conference in Orlando? Also my onco is very aggressive and is looking into M.D. Anderson for a trial for me. Are you taking any medications for the triple negative?? I go to my onco every 2 mos. to keep up on my blood work for tumor markers? Is it ncessary for me to do a bone scan? I am a bit all over the board, and I apologize for that, I have so many questions.

Posted By: outnumbered
Date Posted: Feb 23 2011 at 9:48am

Hi MAry Pat,

What stage are you? It would be helpful if you posted your info on your signature. Go to the member control panel (upper left) and click on edit profile. You can post your pertinant info like you see so many others have.

I was a stage I. My oncologist does not believe in doing anything more than seeing me every 6 months, does a physical exam, and asks me about symptoms. Last time I had been experienceing headaches so she sent me for a CT. Other than that, no other tests. There are no other meds I can be on to prevent recurrance. Hence the trouble with TNBC. Aside from the CT a few months back, I do nothing except try to live a healthy and proactive positive life. I see a nutritionist to try and eat healthier and to shed those pounds, and I see an endocrinologist because I have osteoporosis (and had it prior to BC) She has me receiving reclast infusions once a year (same as Zometa) and she just put me on 10000 IU of D3 once a week. So I guess the D and reclast may help. Thats it. The rest is in Gods hands.

-------------
~Sara

DX @ age 40 6/24/08 Stage 1 Grade 3 BRCA1+ 187delAG

BMX (nipple-areola-sparing) 8/5/08

Redo BMX (remove nipple and areola) w/ Lat Flap 7/6/09

BSO 9/3/09

NED since 08/05/2008

Posted By: TracyAMac
Date Posted: Feb 23 2011 at 10:06am

A belated welcome to the new women on this site

Michelle -it sounds like you are doing everything you can to help beat this and please don't apologize for sharing your feelings. Most of us had uttered many a "WTF"s and then some. This is a safe place to talk about what you are feeling and we can related to the phenomenon of being strong for so many who are scared for you. It took me a while, but I believe accepting my situation and the loving support of family and friends has had such a positive impact on how I am feeling today.

Mary Pat - I hear you about the menopause symptoms. I am also taking Tamoxifen as I had a 2nd hormone + tumor in the same beast as my TN tumor so that made the crash to chemo pause very difficult. We often call it 'chemo pause" as our pre-meopausal status can show up again when you least expect it! And, it is possible to get pregnant in this state - very hard to keep track of cycles though!!! Similar to some others on this site, I am on a 3/4 dose of Effexor to help with the hot flashes and recently started the EString to help with libido.I tried OTC/topical stuff first but didn't help much and very messy - only added to the libido problem!!! I debated trying the EString as it does contain some low dose slow release estrogen - most oncs are ok with women using it but always best to discuss the risks and benefits of your own situation with your onc.

Tracy in Toronto

-------------
TN&non-TN tumors April/10 Gr3&2;1 metaplastic
Rmast.1/9 nodes w/isolated t.cells
Taxotere&Cytoxan x6
Bone cancer 1980 age17;surgery&chemo AC+Methotrexate
BRCA-ve
On hormone therapy & Metformin Trial

Posted By: mary pat
Date Posted: Feb 23 2011 at 10:27am

Tracy thank you for sharing your experience with the side effects. We are neighbors, I live outside of Buffalo. It is amazing how many girls in my area have tnbc. I would love to start something in this area. Any thoughts??

Posted By: abcmom
Date Posted: Feb 23 2011 at 11:58am

I am supposed to be getting my ovaries and tubes removed next week. I am not BRCA + but I have had a bunch of problems with ovarian cysts and pain from them. The cysts just don't go away and the GYN recommended I go ahead and have them removed with the history of cancer. I am worried about the weight gain and libidio problems?? Should I go through with it? (the surgery I mean)

-------------
Diag 11/06/09 @ 40; Diag w/ TNBC Stage IIA, Grade 3 12/01/09 Node Neg. Dble MX with Recon 12/09 (twice)
Chemo 1/13/10 Chemo done 4/22/10 More recon surg 07/10, PET/CT Scan clear 07/10 NED 07/11

Posted By: outnumbered
Date Posted: Feb 23 2011 at 1:03pm

Hi ABC,

I can't answer that question for you. It is a tough decision to make. I really had no choice because I was BRCA1+. You have to weigh the risk vs the benefit. I was 41 at the time and it was tough. I have a family history of heart disease, I already had osteoporosis, and libido issues were of a huge concern. What I decided was that I can treat the other issues, but ovarian cancer is not very treatable.

My libido will never be where it was when I was 20, and that was an issue before my surgery. When you have 3 kids in 4 years, it tends to suck the romantic desire right out of you.

So, my desire was NOT affected too much, but the physical aspect was and the estring really helped.

The weight gain really bummed me out, but in my case I have come to a level of acceptance. I had a hot little bod before all this, now I still look good, just more average. No more bikini for me, although at 43 that is probably not the best idea anyway, flat belly or not. I just have to work at it now and that is actually a good thing. In the beginning it was really tough though. My body image was a mess. Mastectomies, weird scars (from having the surgery twice) and now weight gain. But I did get through it to the other side. And as you can see from above, the hot flashes are manageable, although I often wonder when they will stop.

Are you seeing an onco-gynecologist? Have you gotten more than one opinion? Maybe they can leave one of your ovaries?

Whatever you decide, I am sure it will be the right decision for you. I am here for you no matter what!

XOXO

-------------
~Sara

DX @ age 40 6/24/08 Stage 1 Grade 3 BRCA1+ 187delAG

BMX (nipple-areola-sparing) 8/5/08

Redo BMX (remove nipple and areola) w/ Lat Flap 7/6/09

BSO 9/3/09

NED since 08/05/2008

Posted By: abcmom
Date Posted: Feb 23 2011 at 1:14pm

Thanks Sara-

I am 42 and have three 12 year olds. Lots of scars from numerous reconstruction surgeries due to thing gone awry so my body issues are bad also. I haven't gotten a second opinion. I guess I might need one, but really can't afford to go to another doctor. The GYN is very compassionate and knows of all my issues so I don't think she would have recommended it if she didn't think it was necessary. She said since the chemo pretty much put me in menopause anyway, etc. Although I haven't had hot flashes since about 3 months after chemo stopped.

-------------
Diag 11/06/09 @ 40; Diag w/ TNBC Stage IIA, Grade 3 12/01/09 Node Neg. Dble MX with Recon 12/09 (twice)
Chemo 1/13/10 Chemo done 4/22/10 More recon surg 07/10, PET/CT Scan clear 07/10 NED 07/11

Posted By: zoomommy2
Date Posted: Feb 23 2011 at 1:16pm

ABCMom,

I don't recall your age, but it you are having chronic pain and problems with your ovaries, I would get them out. You won't miss the pain. We all tend to gain weight with age because we don't cut back on our eating and don't exercise enough. We start losing muscle mass at age 30 and that makes it harder to lose weight. Having your ovaries out shouldn't have any effect on your weight. You don't have to be BRCA+ to get ovarian cancer. I had a hysterectomy at 35, just the uterus out with ovaries left in. Now that I'm 65, I wish they weren't there with the possibility of getting cancer. It's a personal decision for you to make. Just my two cents worth.

Lee in Denver

Posted By: TracyAMac
Date Posted: Feb 23 2011 at 2:18pm

Hi Mary Pat

Indeed we are not too far away from each other! I went to a get together just this past Sunday with about 10 TNBC women- several from this forum. Most are from the west end of Toronto (Mississauga, Port Credit). I am on the east side of Toronto but it was an easy drive on a Sunday.

I might be going to Buffalo early spring with my daughter to help her find a grad dress - only Gr8 but they seem to make a big deal of it. Selection and price are better in your town.Will keep you posted on the date.

Tracy in Toronto

-------------
TN&non-TN tumors April/10 Gr3&2;1 metaplastic
Rmast.1/9 nodes w/isolated t.cells
Taxotere&Cytoxan x6
Bone cancer 1980 age17;surgery&chemo AC+Methotrexate
BRCA-ve
On hormone therapy & Metformin Trial

Posted By: TracyAMac
Date Posted: Feb 23 2011 at 2:37pm

Dear ABC mom

I haven't had my ovaries out but I am not having the problems you are having with cysts. It makes sense to do everything you can to prevent C from coming back, and ovarian cancer is difficult to detect and treat as it is often only identified in a late stage. Sounds like getting a second opinion is challenging but may be worth it - esp if you can see someone who is experienced from an oncology point of view and help make sure that any options to manage the cysts have been fully explored. Some drs are of the view that if you are taking ovaries and tubes out to prevent ovarian cancer then the uterus should go too ask it is all connected and ovarian cancer often starts in the tubes. On the other hand you are BRCA-ve, very young and I don't think you have had a recurrence? Any family history of ovarian cancer? Denise on this site has cautioned young women in the past about the impact on longevity and reduction/elimination of estrogen when women have their ovaries out at a young age. It's a tough call but I am sure you will make the decision that is best for you.

Tracy in Toronto

-------------
TN&non-TN tumors April/10 Gr3&2;1 metaplastic
Rmast.1/9 nodes w/isolated t.cells
Taxotere&Cytoxan x6
Bone cancer 1980 age17;surgery&chemo AC+Methotrexate
BRCA-ve
On hormone therapy & Metformin Trial

Posted By: abcmom
Date Posted: Feb 23 2011 at 6:26pm

Thanks Lee and Tracy. I did have a partial hysterectomy at age 34. Yes, I want to do all I can to prevent this thing from coming back. I am BRCA- but my paternal grandmother died of breast cancer at 50 and my father has prostrate cancer. So I guess it is safe to get them out. Especially with the cysts not going away.

I think it would be spectacular for all of TNBC'ers to have a get together!!

Love to you all,

Keri

-------------
Diag 11/06/09 @ 40; Diag w/ TNBC Stage IIA, Grade 3 12/01/09 Node Neg. Dble MX with Recon 12/09 (twice)
Chemo 1/13/10 Chemo done 4/22/10 More recon surg 07/10, PET/CT Scan clear 07/10 NED 07/11

Posted By: zoomommy2
Date Posted: Feb 23 2011 at 6:54pm

Keri,

I think it would be great to have a TNBC get together some day! How wild would that be! I looked on your profile and you aren't that far from menopause, anyway. So maybe you wouldn't have such a problem having the ovaries out at your age. I think the ovaries are slowly starting to stop producing hormones at this point. I never knew when I went through menopause around age 50. Very simple for me, but it was a gradual thing. Not everyone is that lucky. All that being said, I'd get those ovaries out to stop the recurring pain. Good luck in whatever you decide.

Lee in Denver

Posted By: abcmom
Date Posted: Feb 23 2011 at 7:18pm

I hear ya, Lee! I would be all for helping organize any get together we could do! Yeah and early menopause kinda runs in my family anyway. My mom started going through it at 43.

Have a good night!

Keri

Posted By: mary pat
Date Posted: Feb 23 2011 at 10:20pm

Hi,

I would suggest you to go through with the removal. I will never be comfortable with cysts. My cancer in the breast was hiding behind a cyst, and had I not gone with my intuition, and know something was not right, I would not be here today. You should take every preventive measure possible. I had a bilateral masectomy and my tubes and ovaries removed a yr ago. I was 47 at the time, and although there was some recovery time I am at peace with that decision. The menopause is not fun, I was put on effexor for the hot flashes and gained alot of weight. I m presently be weaned off and getting accupunture and feeling great.

Best to you and your decision,

Mary Pat

Posted By: luvnlife
Date Posted: Feb 27 2011 at 12:31pm

Hi Everyone,

I haven't posted for a few days so I thought I would give an update. What a week, what a week, what a week. I can't say that everything was expected, but I can say it has definitely been an adventure. Between the nausea, bone pain,mouth sores (have two already and I have been using the baking soda/salt mouthwash) and total lack of energy it has been something to behold. If I were not going through it myself, I would not believe it. I think the lack of energy has been the hardest to accept. I have always been known as the person who could put the energizer bunny to shame. This is no longer true. Not only have I lost my batteries, I have lost the spot where the batteries go (LOL). Trying my best to keep my sense of humor and I know it helps. I can not begin to imagine what the next five treatments will be like. I am really looking at one day at a time, but keeping the end in mind.

Take care,

Michele

Posted By: zoomommy2
Date Posted: Feb 27 2011 at 1:01pm

Hi Michele,

Fatigue was my biggest surprise, too. Keeping a sense of humor will definitely help! What you are going through is just for a limited time. You can and will get through it! I hope the mouth sores don't get any worse for you. Be sure and let your onc know about the sores. My onc had a special "miracle mouthwash" if I needed it. Don't worry about the lack of energy. It can't be helped. You will find a pattern to it following each chemo. It will all be over soon. Be sure and drink, drink, drink!

Lee in Denver

Posted By: snugltz
Date Posted: Feb 27 2011 at 4:41pm

Michele

I feel for you. Chemo nearly killed me And I didnt even have the A part of the chemo. I wanted to quit after the second one. My family and doc finally convinced me to continue. I am glad I did now, but boy was it hard. It should/may get better in a few days, just in time for the next treatment. I had mylast treatment 10/6and I still have lots of residual issues. But.....it is still better to be alive. And since this is about all we can do to fight this remember this too shall pass.

-------------
1 cm, 0/2 neg nodes, lumpectomy 6/16/10, cytoxin/taxotere 4x every three weeks, rad start 11/8 33X

Posted By: mary pat
Date Posted: Feb 27 2011 at 6:06pm

Hi friends,

Just was looking for a little feedback. My sister just tested braca 1 positive, and she does not want to do anything but continue her screenings. being that I have the gene as well as being triple negative and had cancer, I think should at least remove her tubes and ovearies. She is done having children. Any thoughts???

Cherish each day!!!

Mary Pat

Posted By: 123Donna
Date Posted: Feb 27 2011 at 6:13pm

Mary Pat,

I'd send Steve a PM asking for his advice. It's very hard to detect ovarian cancer in it's early stages and as we all know, BC can grow very quickly even with the best screening. Your sister must make her own decision regarding her future, but she should do so knowing all the risks involved with being BRCA 1. Wishing you and her the best.

Donna

-------------
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

Posted By: SagePatientAdvocates
Date Posted: Feb 27 2011 at 7:10pm

Dear Mary Pat,

sorry to hear that both you and your sister carry the BRCA mutation...and that you have had TNBC.

are you and your sister BRCA1+?

If you both have not seen a Certified Genetics Counselor (CGC) I think that would be a good first step for you and your sister...or at least your sister...to find out what your risks look like...

My guess would be that you have a family history of breast/ovarian cancer...That is important as well...

The standard advice for a BRCA1+ woman is to have gynecologic surgery...generally a BSO( bilateral salpingo- oophorectomy)...after their family is complete but generally before the age of 40. I am not recommending that any BRCA1+ have surgery of any kind but that is what I understand the recommendation to be. If their is a family history of ovarian cancer the recommendation becomes stronger.

We were told that my daughter had an approximately 45% risk of getting ovarian cancer. My grandmother was diagnosed with Stage IV ovarian cancer in 1946, when I was 2, and she lived for 4 gruesome months.

64 years later we still do not have a reliable test to identify ovarian cancer in an early Stage. It seems that 80% of all ovarian cancer in this country is first identified as Stage III/IV cancer with a life expectancy of approx. 5 years. So gynecologic surgery is normally recommended...and yes, Mary Pat, removal of the fallopian tubes (as much as possible,,,a small amount remains in the uterus)is definitely recommended as part of the surgery. A study some years ago found that BRCA1+ women had approx. 120x the risk of fallopian tube cancer as women in the general population.

Screening for breast cancer is one thing; there is a decent chance the cancer will be found early..but some women don’t want to find it at all if possible so they have prophylactic risk-reducing breast surgery.

With ovarian cancer, though, the surveillance is considered by most oncologists, I have spoken to, to be ineffective.

There is a book that explains some of this called Positive Results by Joi Morris. My daughter wrote a passage on p. 55 and I wrote one on p. 153. I have no financial interest in the book. I just think it may be helpful to your sister. Another good book is called Previvors by Dina Roth Port.

Good luck to both of you....and it is very hard to change someone’s perspective/mind...hopefully your sister will be willing to take actions that may save her life but often folks do what they want, as is their right and it can create difficult friction within a family. A good CGC can help.

all the best,

Steve

-------------
I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates

Posted By: zoomommy2
Date Posted: Feb 27 2011 at 7:21pm

Mary Pat,

Your sister is playing with fire, IMHO. Since she's finished having her children, I'd have a complete hysterectomy. If she were to develop TNBC, it will grow quite rapidly. Mine was never picked up on mammography. My tumor went from nothing to golf ball size in 2 months time. Being through this already, I'd have a bilateral mastectomy and consider myself lucky. Good luck to your sister. I hope you are doing well.

Lee in Denver

Posted By: abcmom
Date Posted: Feb 28 2011 at 9:55am

Mary Pat- Thanks for your advice. I am going through with the surgery tomorrow. As far as your sister goes. I think she should do everything she can since she BRCA +. She is playing with fire as we all know how fast these little buggers can grow.

Love,

Keri

-------------
Diag 11/06/09 @ 40; Diag w/ TNBC Stage IIA, Grade 3 12/01/09 Node Neg. Dble MX with Recon 12/09 (twice)
Chemo 1/13/10 Chemo done 4/22/10 More recon surg 07/10, PET/CT Scan clear 07/10 NED 07/11

Posted By: kirby
Date Posted: Feb 28 2011 at 10:14am

Michele, I found accupuncture really helped with energy levels during chemo.

Mary Pat, ovarian cancer is called the silent killer because there is no good way to detect it so by the time it is found it is often in later stages. Ovarian doesn't give off any real symptoms.....again until the later stages. There isn't an effective way to monitor....unless you are doing ultrasounds all the time. Generally it grows rapidly. Unless you have ovarian cancer the CA125 gives too many false positive readings to be used as an affective tool of measure. Perhaps you are already aware of all this, as well as your sister. I tend not to be a paranoic but I know when I was BRCA tested, if it had been positive, I was having my plumbing yanked immediately.

I watched my mother dx with ovarian. She had it at age 60. She lasted for 3 1/2 years. Going thru chemo 3 1/2 times.

-------------
kirby

dx Feb. 2001. Age 44
Lumpectomy

2cm. no nodes stage 1 grade 3

4 rnds AC, 35 rads

Posted By: zoomommy2
Date Posted: Feb 28 2011 at 4:31pm

Keri,

Good luck with your surgery tomorrow. I'll be praying for a quick recovery for you.

Lee in Denver

Posted By: mary pat
Date Posted: Feb 28 2011 at 4:45pm

just wondering if anyone has done any trials with the parp inhibitors. My onco reached out to MD Anderson but I was not a candidate. Or are any of you that have had treatment now taking anything for preventive measures. I go to the onco every 2 mos and have my ca 125 done. it has been ayr since chemo and my bilateral... Any suggestions besides to try to stop worrying???

Posted By: grma
Date Posted: Mar 01 2011 at 12:10am

Dear Michele and luvnlife- So glad that you found this site. The friends here try to answer and give support. There are some very good researchers here, too.

I found that as long as I took the anti-nausea meds, I could function pretty well. They seemed to make me feel tired though. The Dr. prescribed pain meds. which I took and also tylenol. I had difficulty sleeping from the steroids.

The advice on fluids is good and I still drink lots of water. I was having trouble with my tongue being sore, so I switched to an alkaline bottled water called FIJI. Anything with a ph higher than 7 is good for me.

Everyone is different. Some people can't taste much so they like very spicy food.

I would eat a pint of ice cream just to make my tongue feel better.

Let us know how the chemo is going. I'll be finishing radiation on March-2 and other than being tired, it's quicker than chemo and not as many side effects. I am getting hot flashes from the chemo. I thought I was done with that as I am 61 and had menopause 10 yrs. ago.

This is a great site. Also, the Spiritual Support site is very comforting. Hope to hear from you again.

grma Mary Ann

-------------
dx5/26/10 5cm/5nod/stg3gr.2 neadjuv Taxol 12/FEC 4
mast.Dec.2010/6wks.rad 3-11
NED NO RECON

Posted By: grma
Date Posted: Mar 01 2011 at 12:33am

Mary Pat- I am at MDAnderson and will be randomized for Ixempra. So, I may get it or not. I finished chemo 11-16, had surgery 12-13 and will be finished with radiation March 2. I qualified for this study because I am tnbc and I had cancer in 5 of 31 nodes as shown by pathology after surgery. So, the chemo (taxol and FEC) worked on my breast but not totally on my nodes.

Dr. Ana Gonzalez is the Dr. doing a lot of the tnbc studies here. You can e-mail her at mailto:agonzalez@mdanderson.org - agonzalez@mdanderson.org . If you go on the Anderson website yourself you can contact them about studies.

As far as PARP, Donna and Steve are good sources. I believe at Anderson you have to be stage 4 to qualify??

You might want to have your Dr. ask if you qualify for any other studies that they have here, if you are so inclined.

If I don't get the Ixempra, it's just standard prevention. --Lose weight, change diet (avoid sugar, red meat, etc) 180 min. exercise a week, stress prevention and an aspirin a day. Watch out for any pain that does not go away in a couple of weeks. Pray and have faith.

Friends out there is there anything else?

grma Mary Ann

-------------
dx5/26/10 5cm/5nod/stg3gr.2 neadjuv Taxol 12/FEC 4
mast.Dec.2010/6wks.rad 3-11
NED NO RECON

Posted By: SusanHG
Date Posted: Mar 01 2011 at 8:43am

Hi. I am new here and would like to introduce myself. I am 42 years old and was diagnosed by stereotactic biopsy with DCIS high grade double negative on 12/15/10. I had a few calcifications on mammogram measuring 5 mm. I immediately had breast MRI and it showed a 4 cm. area of enhancement. I had BRAC testing and it was negative. I had lumpectomy on 1/20/11 and sentinel node biopsy. Turns out the surgeon took more out than expected but still I had two margins less than 1 mm, and I had an area of invasion of 3mm. hidden within the large area of DCIS (luckily those margins were not positive). My receptors came out triple negative. I had 0 positive out of 6 nodes removed. My first oncologist suggested chemo, but gave me numbers for 1 cm. (it seems Adjuvant Online lumps 0.1-1.0 cm. together). She then sent me for a second opinion at Roswell Park Cancer Institute in Buffalo (I guess she wasn't confident in her recommendation?) My surgeon had told me to decide between mastectomy and lumpectomy. I had made a surgery date for mastectomy because by this point I was totally freaked out. When I arrived at Roswell Park, they were astonished I would choose mastectomy, and convinced me to have a re-excision for clear margins instead (my breasts are large and have more tissue to work with). I talked to the rad onc there and was pretty confident that this path was the right one for me, so I canceled my surgery which would have been last week. If my gene test would have been positive, I planned on having bilat mx, but it was negative so I will try to keep my breast. I have no cancer in my family except for a nephew who had Hodgkin's lymphoma 2 years ago. Today, I am heading back to Roswell Park to get a second opinion from oncologist there. The surgeon that we had seen two weeks ago quickly asked two oncologists there whether they would recommend chemo and both said no. I am also going to another breast clinic for a third opinion today. My question is for any of you out there who are in a similar situations as mine: large area of DCIS (there was also some hyperplasia) and a tiny tumor of <6mm. Did you decide on chemo? Why or why not?

Also, I am from Buffalo too! So, hello to all you ladies from Toronto/Buffalo! Should we be looking into environmental factors I wonder? I know I am the fifth person just on my block with breast cancer, 4 of them just in the last year (two of these being recurrences). I am neck and neck with another lady-our surgeries are two weeks apart! All I know is we are selling our house ASAP and moving away from the city and all the factories. May sound paranoid, but I am doing all I can to try to beat this. I have lost 27 pounds since the beginning of December and totally overhauled my diet-no meat, no white sugar, almost no white flour, and lots of fish, veggies and fruits. I have 22 pounds to go until I feel safe. I don't want to go over a BMI of 23.

Thanks all for listening!

Posted By: mary pat
Date Posted: Mar 01 2011 at 9:42am

Susan,

I had tnbc and later found out I have the braca 1 prior to scheduled radiation. I ended up initially having a lumpectomy at Roswell with Dr. Edge and then my onco was with Dr. Doughtery with Buffalo Medical. (he is the best) I had 3 opinions and all oncos were going to prescribe the same thing, but found it was so personal there with Doucherty. After chemo I was tested for the gene and was positive (no history of breast or ovarian in our family) I then did not have radiation, but ended up doing the bilateral and had my tubes and ovaries out at Roswell.

I would not have done anything differently. I have so much peace of mind with what I decided regarding having the mutation. I am very troubled Roswell being such a respected research hospital, doesn't seem to have much knowledge on the triple negative.

Let me know how you make out, it is amazing how many of us in wny have tnbc. That is still an everyday concern.

Keep fighting,

Mary Pat

Posted By: mary pat
Date Posted: Mar 01 2011 at 9:49am

Susan I would suggest to consult with Dr. Dougherty. I knew I had triple negative from the start, and both Dr. Levine and Dr. Dougherty said because of the tnbc chemo was a must. They also said in the tnbc the cancer often bypasses the nodes and mutates elsewhere in the body..that was the reason for the chemo.

My feeling on lumpectomy or bilateral...why wait till it comes back?? it was not as bad as it looks..would be happy to have a conversation with you, being we are neighbors. We all know Buffalo is a small town, and I am sure we have a connection somewhere.

Posted By: Charlene
Date Posted: Mar 01 2011 at 10:02am

Dear SusanHG,

Your case sounds a little similar to mine. I was sent to a breast surgeon to have my calcifications checked out. While examining me, she found my tumor (invasive lobular carcinoma) which had not shown up on the mammogram. I had a needle biopsy on it and then an MRI showed two other areas. I then had two MRI guided biopsies--one area was more ILC and one what not. I chose lumpectomy because both my surgeon and my medical oncologist said that mastectomy in my case would not improve my long-term prognosis. After my first surgery, my tumor extended to less than 0.1 cm from one margin, so I had a re-excision, which showed no additional cancer. My calcifications were also removed and showed atypical hyperplasia. I had chemotherapy because it is the only treatment for Triple Negative; most everything I have read since states that TNBC always requires chemo. After chemo, I had radiation which I found very easy to tolerate. I wish you the best of luck. I'm afraid if you skip chemo, you might regret it later on.

Charlene

-------------
DX 3/10 @59 ILC/TNBC
Stage 1, Grade 2, Multifocal; Lumpectomy/re-excision
SNB 0/4 nodes, BRCA-; Taxotere/Cytoxan X4, 30 rads
3/14:NED

Posted By: mary pat
Date Posted: Mar 01 2011 at 10:05am

Charlene ,

I agree with you 100%. I met so many girls that have those regrets and which they had the chemo and did not wait for it to come back. I am from Buffalo and consulted with 3 oncos including Roswell where Susan is going and they said I needed chemo due to the tnbc.

Posted By: outnumbered
Date Posted: Mar 01 2011 at 10:41am

Susan,

I did not have a triple negative savvy oncologist to start. I had a 2.6 cm DCIS with multi focal invasion <5mm . The guidelines for "regular" bc are under 1cm, no chemo, so thats what I was told. 9 months later I learned more about TNBC and went for another opinion. I was told the window of opportunity had closed and the risk vs benefit was not in my favor. The bottom line is I have not had chemo. I wish I did!

I am telling this to you because although I am not paralysed by the fear, I do live each day looking over my shouder. I know I will feel better once I hit that 5 year mark, but until then....

Why have regrets? I would fire all the guns available if I knew then what I know now. Hindsight is 20/20, but I hope someone else can benefit from my mistakes. I have been seeing many more newly dx with small stage 1 getting TC without the A. Food for thought...

I must also say I am not a doctor, and I am only sharing my experience strength and hope.

Best wishes and we will support you no matter what you decide!

-------------
~Sara

DX @ age 40 6/24/08 Stage 1 Grade 3 BRCA1+ 187delAG

BMX (nipple-areola-sparing) 8/5/08

Redo BMX (remove nipple and areola) w/ Lat Flap 7/6/09

BSO 9/3/09

NED since 08/05/2008

Posted By: sue
Date Posted: Mar 01 2011 at 2:17pm

Hi Susan,

See my stats below. I am no doctor, but my onc. told me she would recommend chemo 75% for me based on my younger age and type of chemo being used (Taxotere and Cytoxan x4 treatments) because she had seen the cancer come back in others with my stage and tumor size. A second opinion resulted in the same recommendation.

I had a lumpectomy then a re-excision which achieved clear margins. My DCIS was 2.5 cm and over 5 cm was removed from the breast to clear margins. This resulted in the left breast being somewhat smaller than the right but nothing overtly noticeable with somewhat loose or draped clothing. For me the lumpectomy was the right choice even with the difference in breast size. It is a very personal decision for each woman.

I just finished chemo in February and am glad I did it. It was no picnic at times, but doable, and I have the peace of mind knowing I did all I could to fight this still elusive form of breast cancer. I am scheduled to start radiation next week, 34 treatments.

Wishing you the best with your decisions.

Sue

-------------
Dx 7/10, age 53. TNBC left breast, stage I, grade 3, IDC 0.5 cm, DCI 2.5 cm, 0/8 lymph nodes neg. BRCA-. T/C x4 finished 2/09/11, rads x34 finished 4/21/11.

Posted By: snugltz
Date Posted: Mar 01 2011 at 2:37pm

My tumor was also slightly less than 1cm, with a speck of DCIS just past it. I had two opinions, one from the TN doc at Stanford, The Stanford doc said without chemo, chance of recurrence was 25 to 30%. With chemo, cut it to 10%. Thats 1 in 4 vs 1 in 10. Much better odds.

-------------
1 cm, 0/2 neg nodes, lumpectomy 6/16/10, cytoxin/taxotere 4x every three weeks, rad start 11/8 33X

Posted By: SusanHG
Date Posted: Mar 01 2011 at 8:35pm

Thank you Mary Pat and Charlene for the feedback. I am actually having the opposite experience. To me, Roswell really knows what they are doing, as opposed to the other two breast clinics I have been to. Dr. Kulkarni at Roswell picked up on two mistakes that my surgeon made (took out too many nodes and made a huge incision). Also, the pathologist there (who is the only one they trust) found numerous mistakes on my pathology. A big one was tumor grade. Originally, they thought it was Grade 3, but since Roswell does not trust anyone and redoes everything, they determined it was a Grade 2, and the pathologist works closely with both the surgeons and oncologist so that the correct diagnosis is found. Also, there is a question whether my DCIS might be estrogen positive progesterone positive, so they are redoing this and will check it again when I have my next lumpectomy. My husband and I have been doing intensive research (he has access to all medical journals through his work in biomedical research) and Roswell is the only one up on all the research for trip negative. Everyone else does not seem to have a clue. So, this is what they determined for me: if I truly only have 3 mm of invasive breast cancer (grade 2), then my risk of metastasis is between 1-2%. Since chemo isn't 100% effective, it would be counterproductive in my case to risk chemo. Yes, there is still that risk, but my risk of dying from other causes in the next ten years is 2% as well. If, in my next surgery, any more invasive cancer is found, then this will definitely change the chemo conversation. I then asked what do I do if no chemo. Well, after a successful lumpectomy and 7 weeks 1 day radiation, then I need to lose weight down to the low end of my weight range (another 30-40 pounds) and cut down to 20% fat in my diet. These two changes have found to be incredibly effective in reducing relapse in only triple negative cancer. I did already know this through research and have been working on it, but it was nice to know they were also up to date. I understand that chemo is important in most trip neg cases, but when it is a tiny tumor like mine, then there isn't enough danger there to warrant it. It is my personal belief that our western industrialization of food is what causes cancer, so changing this factor in our lives is the most important thing we can do. I now eat close to 100% organic and pasture raised dairy. I trust no food until I see ingredients are all natural and unprocessed (which mostly means foods from the produce section). This is a true tragedy for all of us that we have to deal with this disruption of our food supply, but there are things we can do about it like being proactive and fighting for more regulation. Roswell has helped my nephew recover from cancer. My neighbor had gone originally to another doctor for her cancer and he screwed up. She had a relapse but at this point it had spread through her lymphatic system. She then went to Roswell but there wasn't much they could do about it. She wishes she had started at Roswell. Anyway, this is my take. Other doctors seem to try to break the rules, but Roswell sticks with them which to me is the way to go. If there is research for something, they know about it and treat accordingly. If the research isn't there, they don't risk it.
Mary Pat-It is so nice to talk with someone from Buffalo, especially someone who is triple negative. Maybe we need to form a support group?

Posted By: SusanHG
Date Posted: Mar 01 2011 at 8:43pm

Also, I wanted to add after reading more posts that I didn't see the first time, 3 mm is small, but any more would be going into the "grey" area. Also, tumor grade ups the risk as well-grade 3 is much higher risk. As tumor size approaches 1 cm., then risk goes up considerably as well. Research studies have shown that anything >5 mm. may benefit from chemo so this should be considered. As far as research on smaller tumors, there is little evidence of relapse, if any.

Posted By: 123Donna
Date Posted: Mar 01 2011 at 8:48pm

SusanHG,

Thank you for posting all this good information. I think there is an environmental connection with TNBC and maybe many other cancers.

Donna

-------------
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

Posted By: snugltz
Date Posted: Mar 01 2011 at 9:13pm

Susan

Sounds like you have done good research and chemo can cause many not so good things to happen also. And if your recurrence rate is 1 to 2% without, going through the chemo, along with all the things that can turn up later because of it (the neuropathy, heart issues, etc etc) I think you may be wise to forgo the chemo. Glad you caught it so early.

-------------
1 cm, 0/2 neg nodes, lumpectomy 6/16/10, cytoxin/taxotere 4x every three weeks, rad start 11/8 33X

Posted By: zoomommy2
Date Posted: Mar 01 2011 at 10:22pm

Keri,

I hope your surgery went well today. Praying you have a quick and easy recovery.

Love,

Lee in Denver

Posted By: grma
Date Posted: Mar 02 2011 at 12:41am

Susan HG- Glad you made a connection with Mary Pat. You sound like you've done a lot of good research. I have lost 22 lbs. since Dec. Do you have some good cookbooks that you can recommend? Do you add flaxseed to your diet or any other vitamins and minerals?

grma Mary Ann

-------------
dx5/26/10 5cm/5nod/stg3gr.2 neadjuv Taxol 12/FEC 4
mast.Dec.2010/6wks.rad 3-11
NED NO RECON

Posted By: SusanHG
Date Posted: Mar 02 2011 at 7:43am

Hello all,
Just wanted to say that I am so happy to have found such a great group of ladies to commiserate and hope with!

123Donna: When I asked my oncologist yesterday about environmental effects, she did not deny this. It is quite apparent to me that there is some kind of environmental impact going on with the clusters I have seen both in my own case and in others' workplaces etc. What she did say was that it is being extensively researched because of the possibility of multiple lawsuits lining up. With all the epidemiologists working on this problem, so far, they have found nothing. But if there is an environmental component, they will eventually find it. Let's hope they do, and maybe they can then subsequently find a cure.

snug1+2: Thank you, I hope they found it early enough as well. I am actually very anxious about getting my second lumpectomy date. Knowing how quick this cancer can form, I don't want any stray DCIS cells to mutate again. Before BC, I never thought life could be so uncertain.

GRMA: Great that you were able to shed those pounds! Cancer is a great motivator, isn't it? All the anxiety helps as well. I do take many vitamins and minerals, most important being Vitamin D. I take 1000 IU because I do drink some milk and my multivitamin contains some as well. Also, B complex and Vitamin C, Selenium, Zinc, and Vitamin E (which I need to stop with my surgery coming up). I make a great blueberry smoothie with soy powder, flaxseed, orange juice, and blueberries. Also, I try to include the most whole grains that I can, but I admit to swaying somewhat with jasmine rice, sourdough bread etc. Life can't be that strict. The only cookbooks I recommend are vegetarian cookbooks. These almost always contain recipes that are good for you, and since I only eat fish now (no meat or poultry), it is really all I need. Surprisingly since my husband is French (and they are most notorious for their meat dishes), I get lots of great vegetable recipes from my mother-in-law. The French seem to embrace making food taste good. So, I would also have to include some great authentic French and Italian cookbooks. There are some other books that I think are very important for everyone with cancer to read, if you haven't already.

Anti-cancer: A New Way of Life by David Servan-Schreiber

This book was written by a doctor who has survived a brain tumor for 20 years. He takes all the scientific research and maps out what we should and shouldn't be eating to both prevent cancer and hold it off. All of his advice is backed by research, which is why I recommend it. Two examples of foods we should be drinking and eating: green tea 2-3 cups per day (Japanese Matcha is great!) and any dishes containing turmeric (Indian people have one fifth the amount of breast cancers than Americans). Both block tumor formation and cause cancer cells to die.
Can't recommend this book enough!

The Omnivore's Dilemma by Michael Pollan-shows the state of our modern food industry. Depressing yet enlightening. Prepare to be astonished.

Follow these books by the film "Food Inc."which puts all these ideas into pictures. Not for weak stomachs.

Hope these recommendations help!

Posted By: 123Donna
Date Posted: Mar 02 2011 at 8:07am

SusanHG,

Isn't the Anti-cancer: A New Way of Life by David Servan-Schreiber book the greatest? Last year I bought and gave copies to all my girlfriends, three of them being bc survivors.

We have a separate thread talking about Vitamin D. Most of us diagnosed with TNBC found our Vit D levels to be very low or deficient. I know mine was at 19. I take between 5k - 8k a day of Vitamin D3 and after many months got my levels up into the 60's. Please read through this thread as there are some great information and links to other websites and research studies.

http://forum.tnbcfoundation.org/vitamin-d3_topic5338_page22.html?KW=Vitamin+D3 - http://forum.tnbcfoundation.org/vitamin-d3_topic5338_page22.html?KW=Vitamin+D3

Donna

-------------
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

Posted By: SusanHG
Date Posted: Mar 02 2011 at 10:01am

Hi Donna,
Yes, I have read about the Vitamin D link. I don't think it came into play with me because I've been taking supplements and getting tested for 2-3 years and spend a lot of time in the sun on our sailboat, but who knows? Maybe 3 years ago I was deficient, and this played a role. I will check out the link you sent. Thank you.

Also, I've been meaning to buy a few copies of Anti-Cancer and do the same! wish it came in paperback!

Susan

Posted By: SusanHG
Date Posted: Mar 02 2011 at 10:05am

Donna, Just read the link. I think I'll be going back to my primary to get tested! I was on 2000 iu but got scared when I saw it was already in other things I was taking like my calcium supplement and multivitamin. thanks for sharing again!
Susan

Posted By: 123Donna
Date Posted: Mar 02 2011 at 10:10am

Susan,

You can ask your primary or even your oncologist to run a blood test for Vitamin D. My onc tests me and I've been able to see the progress with my levels.

Good luck and let us know what your Vitamin D levels are.

Donna

-------------
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

Posted By: outnumbered
Date Posted: Mar 02 2011 at 10:13am

Keri,

How are you doing? Hope everything went well....

-------------
~Sara

DX @ age 40 6/24/08 Stage 1 Grade 3 BRCA1+ 187delAG

BMX (nipple-areola-sparing) 8/5/08

Redo BMX (remove nipple and areola) w/ Lat Flap 7/6/09

BSO 9/3/09

NED since 08/05/2008

Posted By: abcmom
Date Posted: Mar 02 2011 at 7:36pm

Hi Sara thanks for asking. I think I am going to post a new thread but actually there were complications and they weren't able to do the surgery. I will post a new thread soon.

Thanks,

Keri

Posted By: zoomommy2
Date Posted: Mar 02 2011 at 8:39pm

Keri,

I was hoping that all had gone with your surgery. Let us know what happened in your new thread. Praying for you.

Lee in Denver

Posted By: lisaorock
Date Posted: Mar 03 2011 at 10:35am

Hi Michele,
I'm new here too and I know EXACTLY how you feel. I kept hearing people tell me how well I seem to be coping with all that is happening to me. It didn't seem to hit me until I started chemo at the end of Nov.I had a "breakdown" about a month ago. I just started crying. I was worried about everything. I let my mind go to "dark places" especially after reading so many negative articles about TNBC. My friends and family have been so amazing but it's hard for them to understand what I'm feeling. I'm so glad that you found this site too. It's so nice to read and know we are not alone in this. WE WILL GET THROUGH THIS!
Now I have mostly good days and some bad, but that's normal! Take Care/Lisa

-------------
dx 10/5/10 IDC,lumpectomy 10/19/10,right masectomy 11/4/10,triple negative,BRACCA2+,4ACDD,4,age TaxolDD,age 45,left mx,recon,ovaries and uterus removed 4/21,then possible rads

Posted By: grma
Date Posted: Mar 03 2011 at 11:56am

SusanHG- Yes, I have the anti-cancer book. I thought sourdough bread was ok. What breads do you eat. Isn't it only those without white flour? I read that turmeric has to be eaten with black pepper. Have you heard that?

Thanks for the info.

grma Mary Ann

-------------
dx5/26/10 5cm/5nod/stg3gr.2 neadjuv Taxol 12/FEC 4
mast.Dec.2010/6wks.rad 3-11
NED NO RECON

Posted By: SusanHG
Date Posted: Mar 03 2011 at 2:33pm

MaryAnn,
I've actually read that sourdough is ok as well, but it does have white flour in it, so I'm not sure. Yes, turmeric does have to be combined with black pepper in order for it to work. Good catch! Looks like you are right on the ball!
Susan

Posted By: SusanHG
Date Posted: Mar 03 2011 at 2:34pm

Itry to stick with whole grain organic breads mostly, or whole grain crackers.

Posted By: luvnlife
Date Posted: Mar 03 2011 at 5:16pm

Hi Lisa,

Thank you for sharing and for your words of encouragement. I had a really rough day and I needed the support. I am currently having to wear a face mask in public due to low white cell count. And believe it or not two people at work made fun of me. I was totally taken aback and then it made it start to cry. Luckly I was able to leave work before the crying started, but once I was in my car the waterworks really kicked it. Between that and others treating me like I have the plague, today has not been my finiest moment. I know I just need to look the other way and to remember that when people don't know how to react they often react the wrong way but it still hurt my feelings. I know I have been super sensitive lately, but man I just did not need this drama today.

Thanks for listening ,

Michele

Posted By: Lillie
Date Posted: Mar 03 2011 at 5:36pm

Dear Michele,
I am sorry to hear you had a miserable day at work. The truth is, nobody knows how to truly react to us. Not even family and friends. You need to allow yourself to feel and vent your emotions and then realize how "stupid" people can be sometimes.
Be kind to yourself tonight. Give yourself permission to know that you have the right to feel "super sensitive." It helped me when I did not try to hide my feelings. (Easier said than done). Go to bed early, watch a good movie, eat something that really appeals to you. (As I type this I realize that sometimes nothing appeals to us as we go through treatment) but anyway you have every right to feel as you do.
All of us on this site know where you are emotionally, so keep posting and let us help you through.

God Bless,
Lillie

-------------
Dx 6/06 age 65,IDC-TNBC
Stage IIb,Gr3,2cm,BRCA-
6/06 L/Mast/w/SNB,1of3 Nodes+
6/06 Axl. 9 nodes-
8/8 thru 11/15 Chemo (Clin-Trial) DD A/Cx4 -- DD taxol+gemzar x4
No Rads.
No RECON - 11/2018-12 yrs NED

Posted By: SagePatientAdvocates
Date Posted: Mar 03 2011 at 5:48pm

Dear Michele,

Today was “surrounded by inconsiderate jerks day”....hopefully tomorrow will be better...

it’s good that you can come here and find genuine support from folks who 'get it'..

Please do what you have to do to keep yourself as “germ-free” as possible...

One year one of my little guys was always coming home sick and I went to see his teacher when I picked him up at school...there was another little guy there waiting for his mother...clearly sick and the teacher said he had a 103 temperature, sneezing and coughing like crazy, and she had called the mother and the mother said “I can’t come to get him, I’m busy”...fair enough but when she came to get him I was there and I knew the family pretty well...”Gee, Mark’s really sick...surprised you didn’t keep him home to rest with your mother.” “Oh, she had a hairdresser appointment today and I had to run some errands...” No thought at all to the other 20 kids in the class...totally inconsiderate..

Now, as The Church Lady on SNL used to say “now, isn’t that special?” Smile

as George Bernard Shaw said “the more I know about people, the more I love my dog.”

Hang tough, Michele, you will get through this..

Please try to find the beauty in each day..

Steve

Posted By: lisaorock
Date Posted: Mar 03 2011 at 6:17pm

Hi Michele,
People can be so ignorant sometimes. I think you are right about them not knowing how to react. Please give yourself permission to feel whatever you feel. I am right there with you when it comes to being "super sensitive". Of course we are! We are fighting for our lives! Please take a deep breath and remember we are here for you when you need to vent! You will get through this:) Take Care/Lisa

-------------
dx 10/5/10 IDC,lumpectomy 10/19/10,right masectomy 11/4/10,triple negative,BRACCA2+,4ACDD,4,age TaxolDD,age 45,left mx,recon,ovaries and uterus removed 4/21,then possible rads

Posted By: grma
Date Posted: Mar 03 2011 at 7:49pm

Susan HG- Have you heard anything about resveratrol? There is supposed to be a study done at MOffit Cancer Center in Tampa. I need to do more research on it.

Are there certain brands of vitamins, etc that you use? Have you heard about Shaklee distributors?

Any more suggestions are appreciated.

grma Mary Ann

-------------
dx5/26/10 5cm/5nod/stg3gr.2 neadjuv Taxol 12/FEC 4
mast.Dec.2010/6wks.rad 3-11
NED NO RECON

Posted By: CindyKS
Date Posted: Mar 03 2011 at 8:03pm

Michelle,

Hang in there. People don't always think before they speak. When I started getting my hair back, I decided to go to work without anything covering my head. On the very first day that I tried it, my first elderly client said "What happened to your head?" very abruptly. The second client said "oh my God the radiation made you lose your hair!". I said actually it was the chemo and then she replied "well its gray!". I promptly covered my head after she left. I regained courage a few days later and tried it again without any comments. It gets better.

Cindy

-------------
Age 42; Dx 4/10; IDC; 2.1cm; lumpectomy; ACx4-taxolx4 every 2 wks; Radx37, BRCA 1/2 neg

Posted By: zoomommy2
Date Posted: Mar 03 2011 at 9:22pm

When I was in the hospital for 2 weeks in January 2010 with my emergency gall bladder surgery and bald as could be, I was greeted a number of times by the staff coming into my room with, "Good morning, sir." Now that will do a number on a person's ego! I corrected them each time and the same person never made the same mistake. A friend came to visit the day before I came home and wondered who the little old bald man was sitting in the chair in my room! She didn't tell me that for months afterwards! It's hard to have a thick skin when we are in the midst of all the chemo and rads.

Lee in Denver

Posted By: rigatonismom
Date Posted: Mar 05 2011 at 7:14am

Hi, Michele, Luvnlife,

Glad both of you found this sight. It has been a really helpful site for me and many others. I have two more Taxol treatments left on my chemo. I'm in agreement with most others, saying that it is doable but not always easy. My advice is to just take each day as it comes and don't be afraid or hesitant to call your onc office if you have "any" questions or concerns. After the chemo my treatment plan is a month off, a lumpectomy and nodes(?), a month off and then 6 weeks of radiation.

It was mention that we take care of others. My husband was so devistated when my diagnosis was made that he was down and visibly distraught most of the time. I had to tell him that he needed to find a therapist or a support group to help him. I just didn't have the strength or energy or knowledge to help him. He did find a support group and it really helped him. I am also a pretty positive person and see that as a help in this fight. It has been a real help to have him here as a partner instead as needy person that I had to care for. Hope this doesn't seem too harsh, But we do need to take care of ourselves and we have to realize that our energy must go to this fight.

Nita

-------------
DX 09/10 TNBC Stage3c, grade3, Tumor 2.7cm, chemo started 9/29/10, AC x4, Taxol x12, lumpectomy 4/11/11-tumor .6cm, 3+/22 nodes, radiation x 30 finished 6/30/11.Clinical Trial Cisplatin,PARP 8/23/11

Posted By: luvnlife
Date Posted: Mar 10 2011 at 9:33pm

Hi Everyone,

I haven't posted in a few days so I thought I would give everyone an update. Shaved my head on Monday (had several bald spots so I thought it would just be easier to go ahead and take it off). I have two really cute wigs, but I have to admit it has made me really depressed. I didn't think it would but I was wrong. This combined with my next chemo treatment on Monday has got me down. I must admit I am not the happiest person right now. On a positive note, my energy level has been a lot better this week which makes me dread next week all the more.

I really appreciate everyones' comments and support and as always thanks for listening.

Take care,

Michele

Posted By: grma
Date Posted: Mar 10 2011 at 9:51pm

Dear Michele- I remember that I cried after my head was shaved. I guess its the loss and shock.

It does get better especially when you don't have to shave your legs.

I also went shopping for hats and tried to match my outfits to them.

Michael's crafts has cheap bandanas that I tie under the hats. Target, and payless shoes have cheap hats.

grma Mary Ann

-------------
dx5/26/10 5cm/5nod/stg3gr.2 neadjuv Taxol 12/FEC 4
mast.Dec.2010/6wks.rad 3-11
NED NO RECON

Posted By: SagePatientAdvocates
Date Posted: Mar 11 2011 at 3:06am

Dear Michele,

My daughter shaved her head as well and it was a devastating experience.

I would suggest a book called Turning Heads by Jackson Hunsicker. It is a lovely, inspirational book...Many photos/vignettes of women with their hair gone but their strength, grace, intelligence and beauty intact. It helped my daughter and I hope it will help you.

I know it may be difficult to do, but please try to find the beauty in each day.

good luck to you..one of the best things about chemo is that it will end.

all the best,

Steve

Posted By: 123Donna
Date Posted: Mar 11 2011 at 7:31am

Hi Michelle,

I think that even though we're prepared for the hair loss, when it actually happens it hits us hard. It's the one outward sign that tells you and everyone else you're going through treatment for cancer. Once you get used to the new you, you'll feel less modest about your appearance as time goes by. At home, I only wore bandana scarves or a hat. In the winter time, I liked the fleece caps better. I usually only wore my wig when I went out. Getting ready to go out was easy, no shaving and just plopping the wig on and out the door.

Take care,

Donna

-------------
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

Posted By: Charlene
Date Posted: Mar 11 2011 at 7:47am

Dear Michele,

I understand your dread of the next treatment. I felt so good during the third week that I also got depressed thinking about how sick I was going to feel the next week. I don't know what your responsibilities are during treatment, but one thing that got me through was reading books. It was my only form of escape. I had a strip of "fake bangs" attached to a skull cap that I wore under bandanas and I only wore my wig when I went out. A lot of people complimented my wig, which made me feel better. When it is all behind you, it will be fun watching your hair grow back.

Best regards,

Charlene

-------------
DX 3/10 @59 ILC/TNBC
Stage 1, Grade 2, Multifocal; Lumpectomy/re-excision
SNB 0/4 nodes, BRCA-; Taxotere/Cytoxan X4, 30 rads
3/14:NED

Posted By: SusanHG
Date Posted: Mar 11 2011 at 9:23am

Hello again, Mary Ann,
Yes, I have heard of resveratrol, and prior to my BC diagnosis, was convinced that red wine was the answer. I had thought my only danger in life was heart disease, since that is the only thing people die from in my family. Well, now I know I have another demon at my back, so I drink organic grape juice instead (I cannot seem to find organic grapes and i guess grapes are the worst things to eat non-organically). As far as taking it in supplement form, I've heard conflicting things about it. I guess it can be toxic, so I have stayed away from it. I personally prefer to get most of my vitamins and such from food, although there are clearly things that need to be supplemented such as Vitamin D. There are some Vitamins I do take, but no particular brand. I have not heard of that particular distributor.
I take a multivitamin, 2000 IU Vitamin D (at least until i get my level tested), Selenium, Zinc, Vitamin E, and a B complex and C. I have actually recently started drinking more milk (I hadn't in a while), but all my dairy is always Organic Valley (since they are more likely to be pasture raised).

I wanted to give you all an update on where I am in my treatments. After getting three opinions on surgery, radiation, and chemo, I have decided to opt out of chemo. With my tumor status, grade, and size(3mm, grade2, TN), the chance of metastasis is between 1 and 2 %. My chance of dying by other causes in the next 10 years is 2 %. Chemo would reduce my risk down to 1%. So, although there is a chance that I am that 1 out of 50 that will die of metastasis, I am going to take the risk and avoid chemo at this time. I am having a re-excision on Tuesday, so if they don't have any more invasive cancer and have clear margins, I will start 7 weeks of radiation at the end of April. If no clear margins, then mastectomy. If there is any invasive cancer left in my breast, then it is a definite chemo for me (and I will be kicking myself for waiting so long to have another surgery)!
I found it interesting that my oncologist recommended I lose at least 30 more pounds (I have already lost 30!) She wants me to get to the bottom of my weight range, so I am shooting for less than 140 pounds on my 5' 7" frame, which will be difficult. Also, she said I should be eating less than 20% fat (although not eating meat does help), which will be even harder! But, considering I hopefully won't be needing chemo (knock on wood), I will take it.

Mary Ann-if I hear of any other interesting nutritional advice, I'll let you know. the most important thing to me right now is to spend most of my time eating fruits and veggies because most have no fat and lots of vitamins.

Have any of you heard of the recent study saying that having more children is worse than having none in TN BC? When I was first diagnosed, everyone was blaming my having an only child at 36 for my cancer. Now I guess it was my obesity to blame? If I could only go back...

Susan

Posted By: Charlene
Date Posted: Mar 11 2011 at 9:42am

Dear Susan,

I understand your decision and wish you the best. Nothing is 100% and all of us have a limited time on earth. I get somewhat frustrated at times with the "blame the victim" mentality. You did nothing to cause your cancer except for having lived your life. Don't waste time looking back at things that can't be changed.

Best regards,

Charlene

-------------
DX 3/10 @59 ILC/TNBC
Stage 1, Grade 2, Multifocal; Lumpectomy/re-excision
SNB 0/4 nodes, BRCA-; Taxotere/Cytoxan X4, 30 rads
3/14:NED

Posted By: dmwolf
Date Posted: Mar 11 2011 at 10:02am

Susan, how nice that you can avoid chemo. In your shoes, with such a tiny invasive component and accompanying low risk of met disease, I would too. So for you, this cancer may turn out to be a mainly an opportunity to lose weight and re-assess your life to make it healthier and happier. Maybe you'll be one of the 'cancer as a turning point' people in a year or so. That would be nice.
Good luck,
d

-------------
DX 2/08@43 stg II IDC; gr2,0 nodes. Neoadj chemo, first ACx2 (fail) then CarboTaxotereX6(better). Lump, Rads done 11/08; Clodronate. False alarm queen: PetCT lung & TM marker. NED. PBM w/recon 9/10.

Posted By: SusanHG
Date Posted: Mar 11 2011 at 10:08am

Thank you for that, Charlene. I do have my moments when I wish I could go back, but someone once told me it is the things you don't worry about that come back to haunt you, and I think he was right. I never in a million years thought I would get breast cancer! I am white, BRAC negative, don't smoke and used to drink only occasionally, now not at all, 42, non-Jew, no breast cancer in my family, in fact the only cancer was in my nephew who had lymphoma two years ago. My mom and my in-laws smoke like chimneys (my mom is pretty obese) and are in near perfect health well into their seventies. So, this leads me to believe it is something in my environment or in my own lifestyle causing it. But, I do know that I could make myself crazy trying to find it so I am trying now to just get through treatments and get on with my life in the best health possible. I guess it is all any of us can do...
Susan

Posted By: SusanHG
Date Posted: Mar 11 2011 at 10:11am

Thank you, dm wolf!
I love how you are seeing it. Before, when I thought I just had DCIS, that is exactly how I saw it, but lately those cancer blues have taken over. I do need to try to have as many things good come out of this as I can. It has defintiely improved my life just losing 30 pounds, let me tell you.
Susan

Posted By: abcmom
Date Posted: Mar 11 2011 at 10:52am

Michelle-

Hang in there! I know it is so hard to lose our hair. So much emphasis is put on the way we look. Get you some cute hats, scarves and the part about not having to shave ANYWHERE else is great!!

Love,

Keri

-------------
Diag 11/06/09 @ 40; Diag w/ TNBC Stage IIA, Grade 3 12/01/09 Node Neg. Dble MX with Recon 12/09 (twice)
Chemo 1/13/10 Chemo done 4/22/10 More recon surg 07/10, PET/CT Scan clear 07/10 NED 07/11