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SapphireSkies
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Topic: Newby Introduction :) Posted: May 24 2009 at 4:12pm |
Hi ladies,
My name is Christine, and I'm from Madison, WI. I'm a 30-year-old single mom (and only surviving parent) to my 11-year old daughter, and I was attending college (to eventually become a nurse) when I was diagnosed with BC on April 23, 2009. After several tests, I met my oncologist last Friday, who told me I have Triple Negative. I have a 5 cm tumor and a positive lymph node in my left side, and they believe it has spread to my lymph nodes. They have not found any evidence of METS beyond the lymph nodes at this time, which is good - for now. My oncologist told me she believes I'm at a stage 3 (I still don't understand why she said this...as I thought a stage 3 meant spread to the organs, but she said it had to do with the size of the tumor). -Still confused about the staging stuff.
I will have my first chemotherapy treatment on Friday, the 29th. I will be receiving chemo every 2 weeks for 4 months, in two different phases. The first phase will be with Adriamycin and Cytoxin (together), and the second phase with Taxol. The goal my oncologist has is to see how the cancer responds to chemo, before deciding on the surgery options.
I am SO happy to have found this website, and I look forward to getting to know you all. Thanks for allowing me to introduce myself. This is a scary ride, especially with the triple negative disgnosis, so I consider myself blessed to have found others who truly know what its like and who do understand.
Thanks much!
Christine
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cg---
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Posted: May 24 2009 at 4:38pm |
Dear Christine,
Welcome and you truly have found a place where we understand. First, I am so pleased that your oncologist is doing the chemotherapy first to see if it will shrink the tumor...the wonderful news about neoadjuvant chemotherapy is if there is a Complete Pathologic Response (meaning there is no remaining tumor found when they do the pathology) - excellent for you. If your tumor does not respond - then your oncologist will have the opportunity to change your chemotherapy.
I was diagnosed May 2007 and I did the AC and T dose dense every two weeks and my tumor was 3 cm and I had 3 positive nodes.
If you have a moment please look at the resource section and read all the articles that have been researched pertaining to TNBC.
You will never be alone through this now that you have come here. We have been there, done that and got the bald heads to prove it.
My husband is from Sheboygan, Wisconsin and I know you have some very fine medical facilities around you.
Stages of Breast Cancer
Cancer stage is based on the size of the tumor, whether the cancer is invasive or non-invasive, whether lymph nodes are involved, and whether the cancer has spread beyond the breast.
The purpose of the staging system is to help organize the different factors and some of the personality features of the cancer into categories, in order to:
- best understand your prognosis (the most likely outcome of the disease)
- guide treatment decisions (together with other parts of your pathology report), since clinical studies of breast cancer treatments that you and your doctor will consider are partly organized by the staging system
- provide a common way to describe the extent of breast cancer for doctors and nurses all over the world, so that results of your treatment can be compared and understood
Stage 0
Stage 0 is used to describe non-invasive breast cancers, such as DCIS and LCIS. In stage 0, there is no evidence of cancer cells or non-cancerous abnormal cells breaking out of the part of the breast in which they started, or of getting through to or invading neighboring normal tissue.
Stage I
Stage I describes invasive breast cancer (cancer cells are breaking through to or invading neighboring normal tissue) in which:
- the tumor measures up to 2 centimeters, AND
- no lymph nodes are involved
Stage II
Stage II is divided into subcategories known as IIA and IIB.
Stage IIA describes invasive breast cancer in which:
- no tumor can be found in the breast, but cancer cells are found in the axillary lymph nodes (the lymph nodes under the arm), OR
- the tumor measures 2 centimeters or less and has spread to the axillary lymph nodes, OR
- the tumor is larger than 2 centimeters but not larger than 5 centimeters and has not spread to the axillary lymph nodes
Stage IIB describes invasive breast cancer in which:
- the tumor is larger than 2 but no larger than 5 centimeters and has spread to the axillary lymph nodes, OR
- the tumor is larger than 5 centimeters but has not spread to the axillary lymph nodes
Stage III
Stage III is divided into subcategories known as IIIA, IIIB, and IIIC.
Stage IIIA describes invasive breast cancer in which either:
- no tumor is found in the breast. Cancer is found in axillary lymph nodes that are clumped together or sticking to other structures, or cancer may have spread to lymph nodes near the breastbone, OR
- the tumor is 5 centimeters or smaller and has spread to axillary lymph nodes that are clumped together or sticking to other structures, OR
- the tumor is larger than 5 centimeters and has spread to axillary lymph nodes that are clumped together or sticking to other structures
Stage IIIB describes invasive breast cancer in which:
- the tumor may be any size and has spread to the chest wall and/or skin of the breast AND
- may have spread to axillary lymph nodes that are clumped together or sticking to other structures, or cancer may have spread to lymph nodes near the breastbone
- Inflammatory breast cancer is considered at least stage IIIB.
Stage IIIC describes invasive breast cancer in which:
- there may be no sign of cancer in the breast or, if there is a tumor, it may be any size and may have spread to the chest wall and/or the skin of the breast, AND
- the cancer has spread to lymph nodes above or below the collarbone, AND
- the cancer may have spread to axillary lymph nodes or to lymph nodes near the breastbone
Stage IV
Stage IV describes invasive breast cancer in which:
- the cancer has spread to other organs of the body -- usually the lungs, liver, bone, or brain
"Metastatic at presentation" means that the breast cancer has spread beyond the breast and nearby lymph nodes, even though this is the first diagnosis of breast cancer. The reason for this is that the primary breast cancer was not found when it was only inside the breast. Metastatic cancer is considered stage IV.
This above will describe what your oncologist was telling you.
Connie
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Cebo
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Posted: May 25 2009 at 5:07am |
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Hi Christine! Welcome to this site--so sorry you had to find it, but I think you will find it is a great source for information, a great place to vent, and just a warm and supportive community of people who will help pick you up whenever you are feeling stressed or down. A lot of women undergo neoadjuvant chemo (before surgery) like you, and it has the benefit of telling you how effective your particular chemo combo is. Best of luck, and please keep us posted on your progress.
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Sister DX'ed 11/08
Lumpectomy & SN biopsy 12/08
1.1 cm tumor, node neg (0/2)
Stage 1
DD A/C x 4, Taxol x 4, completed 4/17/09
33 rads (incl 8 boost), completed 6/22/09
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dmayes
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Posted: May 25 2009 at 8:17am |
Hi Christine,
Welcome to the site - these ladies are wonderful ! I am a newby too, and they have guided me through many steps so far (make sure you read the resources for hints on chemo (like carbo load up before dose) and the free scarf offer!). Ask any question you want - there is always someone around who will be able to help.
It is also a great place to vent - so it for that too. Hope you have a few hours spare each day - I have found this site very addictive and I am learning more about this BC and myself as I go through this.
I wish I had the chemo before my lumpectomy to see if/how the tumour reacted - you've got a switched on onc.
All the best and good wishes for the treatment,
Regards Debs
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Debs | Laugh every day, Love every minute.
Dx Mar09 - LB IDC 4.5cm - 0 nodes. BRCA -
Cytoxin/Taxotere x4 end Jul09.
ReCon surgery March10.
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Alison41
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Posted: May 25 2009 at 12:24pm |
Hi Christine
I was diagnosed last October with TNBC Tumour size 5cm with 1 lymph node involved did the neoadjuvant chemo 4 course for Fec and 4 Course of Taxotere. Had MRI in March 09 no visible sign of tumour waiting for the path results after surgery to see whether I have a full Pathology Complete Response.
I had a Bone Scan, Liver Scan and Lung/heart xray and like you there is not spread to other organs.
My BC was Stage 2B Grade 3, it depends on you onc or whoever looks at the path results in this country and they stage and grade the cancer. I do also know that my cells are not basal like which is another plus.
Please Private message me if you want to talk. Unfortunately as I am going for surgery tomorrow will not be able to respond as I will be in hospital for about a week.
It is scary and you will have times when you feel down and scared I have loads of these but the girls on this site know what they are on about. I have found comfort from their knowledge especially Nancy. Unfortunately I live in England so am unable to phone to speak to the girls but I always visit this site.
Chin up .
Alison
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trip2
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Posted: May 25 2009 at 12:55pm |
Hello Christine, we are so glad you decided to join up with us.
I wanted to say that I hope your first chemotherapy session goes smoothly. When you begin your treatments then things sort of fall into a routine.
Be sure and pack yourself a chemo bag. Put some water in there, snacks, newspaper, book, whatever you would like to have handy. Even a throw to put over you, sometimes one can get chilly. It's really nice if you can have someone with you to talk to. They can run out for a sandwich or a big cold iced tea or soda. It really does go faster if you have someone to visit with in the infusion room.
Also if you have any cancer on mother's side or father's side please consider genetic counselor to see if you qualify for testing of the brca 1/2 mutation. This could be important to you if you are positive. Many triple neg women are brca 1 but not all.
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Stage 2 2003
Stage 1 2007
BRCA 1+
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SagePatientAdvocates
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Posted: May 25 2009 at 3:28pm |
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Dear Christine,
I second Pam's suggestion about checking out the facingourrisk website and see a Certified Genetic Counselor(CGC)...but I would go one step further and suggest that you do not necessarily need a family hx of cancer to perhaps consider testing according to a recent study on BRCA1+ women. I would print out this abstract(please see below) and ask your oncologist and a CGC about it
This study may even help get your insurance company to pay for the testing..if you decide to test I would not test just for BRCA1. TNBC is certainly not as prevalent in BRCA2+ women but it certainly does happen.
I am sorry you are dealing with this at such a tender age.
best of luck to you and your daughter!!!!
all the best,
Steve
here is the abstract-
BMC Cancer. 2009 Mar 19;9:86. Links
The prevalence of BRCA1 mutations among young women with triple-negative breast cancer.
Young SR, Pilarski RT, Donenberg T, Shapiro C, Hammond LS, Miller J, Brooks KA, Cohen S, Tenenholz B, Desai D, Zandvakili I, Royer R, Li S, Narod SA.
Women's College Research Institute, Department of Public Health, The University of Toronto, Toronto, Canada. sryoung37@aol.com
BACKGROUND: Molecular screening for BRCA1 and BRCA2 mutations is now an established component of risk evaluation and management of familial breast cancer. Features of hereditary breast cancer include an early age-of-onset and over-representation of the 'triple-negative' phenotype (negative for estrogen-receptor, progesterone-receptor and HER2). The decision to offer genetic testing to a breast cancer patient is usually based on her family history, but in the absence of a family history of cancer, some women may qualify for testing based on the age-of-onset and/or the pathologic features of the breast cancer. METHODS: We studied 54 women who were diagnosed with high-grade, triple-negative invasive breast cancer at or before age 40. These women were selected for study because they had little or no family history of breast or ovarian cancer and they did not qualify for genetic testing using conventional family history criteria. BRCA1 screening was performed using a combination of fluorescent multiplexed-PCR analysis, BRCA1 exon-13 6 kb duplication screening, the protein truncation test (PTT) and fluorescent multiplexed denaturing gradient gel electrophoresis (DGGE). All coding exons of BRCA1 were screened. The two large exons of BRCA2 were also screened using PTT. All mutations were confirmed with direct sequencing. RESULTS: Five deleterious BRCA1 mutations and one deleterious BRCA2 mutation were identified in the 54 patients with early-onset, triple-negative breast cancer (11%). CONCLUSION: Women with early-onset triple-negative breast cancer are candidates for genetic testing for BRCA1, even in the absence of a family history of breast or ovarian cancer.
Edited by steve - May 25 2009 at 3:30pm
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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
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BruinJT
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Posted: May 25 2009 at 3:42pm |
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Hi Everyone-
I'm a 41-year old Japanese American recently diagnosed with stage 1, grade 3, triple negative breast cancer. Here I thought being considered stage 1 would automatically qualify me for 100% survival. It wasn't until meeting with my oncologist and reading more on the internet, that I find out that just by being triple negative (and being grade 3) reduces my survival rate.
I feel like I'm on an emotional roller coaster and have been since I found the lump on March 29th. I'm scared (as most of us are). I start chemotherapy June 4th. I have two young boys (7 next Saturday and 3 1/2) and the thought of leaving them without a mom scares me to no end. I want to be around to see them grow up and get married.
I'm debating whether to read things on the internet or not because everything I read seems to make me more anxious and scared. Nonetheless, I'm glad that I found this website.
I need as much support as possible since it seems that no one I talk to has been triple negative. Although it's a big support to talk to breast cancer survivors, my heart seems to deflate when I hear that they aren't triple negative since it seems that the prognosis for them is better than mine.
Thanks for listening,
Jonie
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SagePatientAdvocates
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Posted: May 25 2009 at 3:55pm |
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Dear Jonie,
You bring up a very important point....sometimes, I think it is better to take a break from the internet, research etc. and perhaps focus on what is most important in your life...your family and trying your best to stay positive as you fight the beast.
Everyone has a different appetite for knowledge.
Men, in general, are prime examples of this. Most men "don't want to know" about the mutation I have. There are 10,000 women in an international study on BRCA and less than 70 men..
I believe, that IF you have the strength, it is important for you to become an advocate for yourself and try to bring new information...and I very strongly believe there will be positive developments in treatment for TNBC.
The folks on this website are very knowledgeable and compassionate from what I have seen. What I have found consistently incredibly miraculous and very special to behold are the women who have just gone through surgery/chemo etc. who nevertheless take the time to post and be supportive to others..it is really marvelous.
We will be here for you...maybe you will come often or once in a while but check in please..
I sincerely wish you good luck..
Also, I believe that if you think positively it will help you...Please try to stay strong.
all the best,
Steve
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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
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dmayes
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Posted: May 25 2009 at 7:37pm |
Hi Jonie,
I can so relate to your feelings - I am 41 and have two girls (9 & 7). I have started chemo and about to have dose 2 this Friday. All is going well and I have been blessed that my symptoms are minimal. Though today in the shower the hair started to come out - I am now sporting a gorgeous pixie cut (ready to shave when the hair is too thinning).
Make sure you get your free scarf (see Resouces) and read the tips on chemo. They are great - though I am still trying to understand the carbs before and during the infusion (yeah - good old chocky fix!).
I agree with Steve and the many others here - attitude is half of your battle. Stay positive (and come here for support when you need to) and remember to laugh each and every day! I did find a study that linked laughter to chemo recovery (cant find it now) and it showed those with humour (like watching funny movies) experienced less side effects. Now that you just have to try :)
Take each day as it comes - and make each day special for your kids. One trick I now do is write a note (on cute paper) and put it in their lunch boxes. The first one they were so excited - sometimes I add a sticker or a special little choc treat. I do one a week - on different days. My eldest just loves it and now I get double the hugs - perfect for a mum who sometimes needs one!
Take care and come here often - I'll add you as a buddy - and just PM if you need to - I am usually here very day (I find this place addictive - but in a good way).
Hugs and best wishes coming your way - Debs
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Debs | Laugh every day, Love every minute.
Dx Mar09 - LB IDC 4.5cm - 0 nodes. BRCA -
Cytoxin/Taxotere x4 end Jul09.
ReCon surgery March10.
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trip2
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Posted: May 25 2009 at 7:54pm |
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Steve, thank you so much!
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Stage 2 2003
Stage 1 2007
BRCA 1+
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BruinJT
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Posted: May 25 2009 at 8:56pm |
Hi Steve-
Thanks for your wonderful and supportive email. I think I do need to take all of this in small doses. On the one hand, I'd almost rather NOT know the facts and hope everything will be OK; and on the other hand, I want to know everything in case there is something I can do to complement my therapies.
I'll do my best to read as much as I can, but at the same time, I'll have to know my limitations and walk away from the internet when it gets to be overwhelming.
I went to my son's basketball games this long weekend (a game a day). I've always enjoyed going, but it was somewhat bittersweet as I thought that I might not be able to go to his games this summer as I'm going thru chemo. On the positive side, I enjoyed his games more than I ever have.
I'm trying to remain positive, but I'll be honest, I'm a pessimist (just ask my husband) and it's hard for me to change 41 years of pessimism!
Thank you for your support Steve!
Jonie
Edited by BruinJT - May 25 2009 at 9:21pm
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Dx Apr09 - RB IDC 2.0cm - 0 nodes.
Cytoxin/Taxotere x6 every 3 weeks, will begin June 4th.
Radiation (unless test positive for BRCA in which might do mastectomy)
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BruinJT
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Posted: May 25 2009 at 9:09pm |
Hi Debs-
Thanks so much for your email. We do have MUCH in common with two young kids and our diagnosis and treatment is exactly the same (but I'll have 6 treatments every three weeks as opposed to 4).
I inquired about the free scarf. I have to find the tips on chemo - haven't found that on the site yet.
I was talking to my friends about laughter and trying to find movies that will give me one of those belly laughs that you laugh so hard you cry. (Any suggestions?!) I'll have to find some funny DVDs and bring them to watch during my chemo.
I'm trying to stay positive, but as I said to Steve, I've been a pessimist for 41 years, so it's hard to switch gears!!
I'll have to send you a PM because I think my biggest question for you is how you told your girls.
Thanks for your wonderful support!
Jonie
Edited by BruinJT - May 25 2009 at 9:22pm
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Dx Apr09 - RB IDC 2.0cm - 0 nodes.
Cytoxin/Taxotere x6 every 3 weeks, will begin June 4th.
Radiation (unless test positive for BRCA in which might do mastectomy)
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SagePatientAdvocates
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Posted: May 25 2009 at 9:28pm |
Dear Jonie,
my mother died at 46..her mother died at 47...my father had lymphoma when he was 50...
there used to be a comic character named Joe Palooka and there was a character in there who always walked around with a rain cloud over his head.
that was me after my mother died...I would have "bet the farm" that I would not have made it to 50..I celebrated my 65th birthday a few months ago and G-d willing will dance at my daughters wedding in 6 weeks.
I understand pessimism and I understand where you are BUT PLEASE try to take each day at a time...try to take some beauty from each day...your child smiling at you or doing well on the ballfield...or a hug...a touch...something that will take your mind off cancer/chemo even for a few minutes...
Life will be beautiful again for you..The best thing about chemo is that it ends..The nausea ends..the aches and pains..the lethargy will end..to be honest you may not ever feel the same again...my daughter doesn't but everyone reacts differently..but she is fit, healthy and NED.
it is really important to dig deep and find your inner strength..it's there and we will be here..
hang tough, Jonie..you will make it and you too will dance at a wedding and see your grandchildren (I have two 9 girl 7 boy)...I have seen my six children grow into adulthood and young adulthood..(.ages 41, 41, 29, 27, 25, 24) yeah and that 41 is not a typo..twins..
positive thinking is really important...try to enjoy life as best you can recognizing some days will just be lousy...but it will get better!!!
You shall be in my prayers...
on that note I am going to sleep..I literally say prayers every night for everyone here and everyone on FORCE...I am blessed to be in the presence of such marvelous, extraordinary people.
and special prayers tonight for my new friend Pam...May G-d watch over you as you watch over us..you are simply an extraordinary woman.
all the best,
Steve
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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
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SagePatientAdvocates
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Posted: May 25 2009 at 9:36pm |
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p.s. Jonie, I just re-read your post re: chemo....
I brought my laptop to my daughter's infusions and I bought one of those splitters..you know the kind with two cords and four ear buds so we both could listen together..
to be honest each infusion was about 4 hours start to finish and she never made it through..she held my hand and normally in about 20-30 minutes she fell asleep..but she held on to my hand throughout..
being with her for those four months was one of the best things I have ever done in my life..I live in CA and she in NY so it was rough on this old body but it nurtured my soul and hers. We have a bond that will never be broken..
so in addition to the funny DVDs please try to have someone who cares about you keep you company...chemo is very rough to go through on your own..
also my daughter told me that she had a metallic taste in her mouth so she was advised not to eat food that she normally loved because when she had it after it would remind her of the chemo...but everyone is different..
you will get through everything!!!!!!
all the best,
Steve
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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
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BruinJT
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Posted: May 25 2009 at 10:01pm |
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Hi Steve-
You are a very strong man to be able to survive thru losing your parents to this horrible disease. But worse yet, seeing your daughter to also have to go thru this had to be the worst. This is the main reason why I want the BRCA test (which I'm sure I'll get - just awaiting pre-approval). I would hate to see my boys be a victim (or at least not be informed) if I passed that on to them.
I used to say that I was Eeyore with a dark cloud over my head instead of Tigger or Pooh who was always happy and upbeat. So in some respects, it almost wasn't a surprise when I got the diagnosis.
I really am trying to notice the small things and take joy in them. It's coming slowly. I get a sense of joy of seeing the jacarandas (my favorite tree) in bloom and I cheered even LOUDER than usual when my son scored a basket during his game today.
It helps having wonderful people like you remind me that I will get through this. (As many great people before me.) It's just hard for me since it's new to me and I'm having to live thru this right here and right now.
Thank you for your prayers. I should go to sleep too. I've come to pray every night and thank G-d when I wake up each morning.
As for the info on the DVD, I'll keep that in mind. Another friend told me the same thing. I plan on going with my best friend (whose mom had breast cancer) or my husband.
Thank you Steve,
Jonie
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Dx Apr09 - RB IDC 2.0cm - 0 nodes.
Cytoxin/Taxotere x6 every 3 weeks, will begin June 4th.
Radiation (unless test positive for BRCA in which might do mastectomy)
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SapphireSkies
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Posted: May 26 2009 at 3:16am |
Thank you all for the warm welcome. :)
Connie, thanks so much for the clarification on the stages.
Alison, I'm thinking about you - please let us know how you're doing when you come back from the hospital!
Pam, thank you for your kind words and for the advice on the chemo bag. I have been offered genetic counsiling/testing but am playing phone tag with them currently. I hope to get tested.
Steve, thank you for all the great info and for sharing your story.
Thanks again to everyone who replied. :)
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trip2
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Posted: May 26 2009 at 5:06am |
Steve,
I want to send my congratulations to your daughter and fiance and hope they have a long wonderful life together.
You are teaching us about another angle I bet many of us do not think about and that is men with mutations.
How difficult has it been to find other's in the same situration as you?
Here I thought It was very hard to find information or another women with TNBC until we got this forum.
Do men have a place they go online?
Do you see them at the Force conference's?
Just curious, have a good day,
Edited by trip2 - May 26 2009 at 5:13am
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Stage 2 2003
Stage 1 2007
BRCA 1+
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trip2
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Posted: May 26 2009 at 5:17am |
BruinJT wrote:
Hi Debs-
Thanks so much for your email. We do have MUCH in common with two young kids and our diagnosis and treatment is exactly the same (but I'll have 6 treatments every three weeks as opposed to 4).
I inquired about the free scarf. I have to find the tips on chemo - haven't found that on the site yet.
I was talking to my friends about laughter and trying to find movies that will give me one of those belly laughs that you laugh so hard you cry. (Any suggestions?!) I'll have to find some funny DVDs and bring them to watch during my chemo.
I'm trying to stay positive, but as I said to Steve, I've been a pessimist for 41 years, so it's hard to switch gears!!
I'll have to send you a PM because I think my biggest question for you is how you told your girls.
Thanks for your wonderful support! Jonie |
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Stage 2 2003
Stage 1 2007
BRCA 1+
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trip2
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Posted: May 26 2009 at 5:22am |
Hi BruinJT and welcome to our forum.
To find the free scarf link and the chemo/radiation tips look look at the left top of you screen just above the post box and you will see a link a link called "Discussion Forum". Click on that then look thru the different sections we have in our forum. One will be called "Resource, News and tips, click on that and the info you are looking for is right at the top of the list.
Also browse around in there, we try to add new tips of information daily.
If you have any more trouble PM me and I'll help.
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Stage 2 2003
Stage 1 2007
BRCA 1+
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