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cg--- 
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Joined: Jul 20 2007 Location: Canada Status: Offline Points: 1379 |
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 Posted: Oct 18 2008 at 11:37am |
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Thank you for sharing your family story Ronda....I was truly moved and had no idea that even after BRCA was identified it still took jumping up and down to get appropriate investigations!
Since I do not know my BRCA status - in Canada it could take years to see a geneticist I must share my story of a co-worker.
In the mid 70s, I worked with a woman who had had prophylactic mastectomies way before it was even considered routinely as a treatment management. Her whole family was German on both sides and no other intermarriage of nationalities. Her grandmother, mother, all her aunts, her sisters, all developed breast cancer at a young age 30s and early 40s...my co-worker was in her 20s after her two daughters were born she had mastectomies, hysterectomy and bilateral salpingo-oophorectomy. Through the 20 years I worked with her...she had to have new implants only. She retired from the hospital. That woman is a grandmother today. I see her walking when I am out walking my dog.
Her daughters will be doing the same (except now they can get better looking breast implants).
I fought to get radiation after mastectomy for a possible 5% increased survival suggested on meta-analysis....BUT, to cut the risk by 87%-90% by having prophylactic surgery is what I would consider hitting the life lottery...and what could possibly have more value than a long life filled that might even have a few grandchildren in it!
I told the surgeon when he told me "they don't grow back!" ...that I was not defined by a mound of breast tissue..and there was a whole lot more to the person I am than what went into my WonderBra. I still feel the same 18 months later!
Connie
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NancyJane
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Joined: Aug 25 2008 Location: Key Largo, FL Status: Offline Points: 241 |
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Posted: Oct 18 2008 at 12:55pm |
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Ronda:
Thank you so much for your post. Your family story is so compelling. Also, it is great to hear how well you are doing post-surgery. By the way, your inbox is full
 ! Much love,
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41yr dx 7/25/08
Lumpectomy and ax node disection (38 nodes, all clean!) 8/12/08 T2 grd 3, N0, TN IDC BRCA1+ ACx4,Tx12 10/08-3/09 prophylactic hyst, ooph,mast & one-step recon 3/30/09 |
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Ronda
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Joined: Jul 31 2007 Location: United States Status: Offline Points: 587 |
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Posted: Oct 18 2008 at 1:03pm |
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Hi Connie,
Your sooo right regarding "save the breast" mentality. I have to admit before this drama, I felt the same way. Knowing what I know now, I think we triple negatives ARE the gals who benefit the most from prophylactic surgeries. Even if you are testing BRCA negative there are many who believe Triple neg is genetic, we just haven't discovered the other genes yet. With this in mind we need to remember WE ARE GIVEN THE SAME STATS AS OTHER BC'S WHEN DECIDING TREATMENT IF WE ARE BRCA UNKNOWN OR BRCA NEGATIVE.
If anyone knows of Non BRCA triple neg stats, please post them. Until we insist on gene testing, the undiscovered BRCA's in our midst will continue to influence all triple neg stats.
It's good to see survivors in our midst, isn't it??.....very reassuring!
It's only been a year and a half since this all started and I'm feeling pretty darn good. Now if I can get through the other year and a half with no surprises, I'll be in good shape (I hope!).
Ronda
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DX 3/07 IDC Trip neg, stage 2b, SN biopsy 3 node neg. No vascular invasion, Mast 4/07 AC+T DD Finshed 8/07 BRCA 1, Proph Mast 10/07. Reconst & Prophy Hyst. 10/08
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DeeDee
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Joined: Oct 14 2008 Location: Illinois Status: Offline Points: 33 |
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Posted: Oct 18 2008 at 3:16pm |
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I just realized that I left out an important part of the uncertainty about trying to get the BRCA test regarding my three daughters. Their paternal grandmother had breast cancer at the age of 47 -- who knows what kind -- and she lived another 17 years cancer free until she died from a stroke. Her sister (who is now 98) had breast cancer sometime (?) but never talked about it and now doesn't remember when. Her two sons don't remember either. If she had only had a daughter, I'm sure we would know. Anyway, I worry about having the test, being BRAC- and my daughters thinking they don't have to worry as much.
Thanks to all for sharing their stories. |
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dx Nov.7, 2007
Lumpectomy Nov 15, 2007 1.05cm. stage 1 grade 2 sentinel lymph nodes neg. chemo AC 4 treatments 30 rads ended April 2008 |
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Nancy
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Joined: Jul 23 2007 Location: Altoona, PA Status: Offline Points: 3814 |
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Posted: Oct 18 2008 at 4:12pm |
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Hanna,
Thank you so much for the links and I didn't realize my inbox was full! I will post the link now.
Nancy
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Nancy
DD Lori dx TNBC June 13,2007 Lumpectomy due to incorrect dx of a cyst mastectomy July 6 2007 chemo ACT all 3 every 3 weeks 6 tx Aug-Nov 28 rads ended Jan 2008 |
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Nancy
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Joined: Jul 23 2007 Location: Altoona, PA Status: Offline Points: 3814 |
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Posted: Oct 18 2008 at 4:22pm |
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Hanna,
Can you please tell me how to locate the article on BRCA and wine. I looked through the initial link, and can't find it.
Thanks,
Nancy
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Nancy
DD Lori dx TNBC June 13,2007 Lumpectomy due to incorrect dx of a cyst mastectomy July 6 2007 chemo ACT all 3 every 3 weeks 6 tx Aug-Nov 28 rads ended Jan 2008 |
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hshapira
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Joined: Apr 30 2008 Location: United States Status: Offline Points: 24 |
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Posted: Oct 18 2008 at 4:48pm |
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http://www.molecule.org/content/article/fulltext?uid=PIIS1097276508006564
http://www.molecule.org/content/article/fulltext?uid=PIIS1097276508006564 Edited by hshapira - Oct 18 2008 at 4:49pm |
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dx 4/05
6 invasive ductal tumors (4 of them grade 3) TN, BRCA1+ 4AC, Bilateral mastectomy, BSO |
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trip2
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Joined: Jun 03 2007 Location: Under Palm Tree Status: Offline Points: 8549 |
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Posted: Oct 19 2008 at 8:43am |
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Sometimes I wonder why I did not test earlier, say after my first diagnosis in 12/02 but though I brought it up to a nurse there wasn't anything said, I wasn't online researching and let it all slide. Shame on me.
Last year my oldest daughter was diagnosed in January, me again in February and then I got the test thru the encouragement of my sister and daughter. I was positive as was both of my daughters for the same mutation.
I had mixed feelings at first about my 21 yr old carrying this knowledge with her while she is working and trying to get thru college, begin a career as so many are doing. But I realize it is best that she know for her own health and well being. Knowing she is brca1 positive tells her she needs to be vigilant and begin doctor observation soon. She is empowered now and hopefully it will save her life.
I wonder if I had tested earlier if I could have prevented my oldest daughter being diagnosed but I cannot change the past. This has really taken hold in the last few years and thank heavens we have the knowledge now and support, encouragement for family members, loved ones, a support group to find out what we can to possibly help change the future of one of us or a loved one.
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Stage 2 2003
Stage 1 2007 BRCA 1+ |
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Ronda
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Joined: Jul 31 2007 Location: United States Status: Offline Points: 587 |
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Posted: Oct 20 2008 at 10:31am |
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Hey NancyJane, Just cleared my box!!!
Hey Pam, No shame for my dear friend Pammy, the would of, should of, could ofs haunt every one of us in their own way. We are laying the ground work to help women survive this by voicing our regrets, but never shame. You are the coolest person on the planet to me and we need you here.
My 25 year old has mixed feelings about being tested, she is a bit superstitious and doesn't want to put the cancer trip into her mind set, if you know what I mean. I have a feeling she doesn't have the gene, she's alot like my mother, but I will be offering to test her for piece of mind.
By the way YOU MUST RESEARCH CO Q 10 ENZYME AND
L-CARNITINE FOR CHF!!!! I WILL SEND YOU SOME IF YOU WANT ME TO...PM ME !!!! Smack! Big kisses and a warm welcome back Dear Pam!!!!
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DX 3/07 IDC Trip neg, stage 2b, SN biopsy 3 node neg. No vascular invasion, Mast 4/07 AC+T DD Finshed 8/07 BRCA 1, Proph Mast 10/07. Reconst & Prophy Hyst. 10/08
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trip2
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Joined: Jun 03 2007 Location: Under Palm Tree Status: Offline Points: 8549 |
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Posted: Oct 20 2008 at 11:20am |
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Ronda my dear, Thank you so much, I will look into these items you suggested.
You are right, we can't look back, wouldn't accomplish a thing.
Even though it seems we have ions to go before this gets straightened
out things are so much better than they were even 5 yrs ago. I feel like we are pioneers in the search for answers.
Things are definitely changing for the better. Ms. Ronda, I want you to know I had my D test done a few weeks ago and will learn next week where I sit.
You sweet Ronda is the pioneer riding thru town on her white horse announcing for all to get their D tested! You've certainly straightened us up and we thank you very much for that.
 Smack back at ya!
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Stage 2 2003
Stage 1 2007 BRCA 1+ |
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Sbb123
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Joined: Oct 10 2008 Location: United States Status: Offline Points: 11 |
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Posted: Oct 20 2008 at 2:36pm |
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Hey all! I want to thank everyone for all their stories and personal triumphs as well as research info. I made an important decision over the weekend. I have had a rough time with the chemo. Unfortunately I am really sensitive to medication (another inherited family trait besides the BRCA 1!!!). I still have 2 more A/C treatments and I am dreading them!
I decided I am going to opt for the bilateral. i just can not go through the possibility of chemo!
I never thought I would get here so fast. Quite frankly I think my husband is relieved.
I still have to get through the rest of chemo but at least I know what I am going to do.
-SBB123
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hshapira
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Joined: Apr 30 2008 Location: United States Status: Offline Points: 24 |
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Posted: Oct 20 2008 at 3:12pm |
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It took me time to make the decision. I have never looked back. It gave me peace of mind and the results are great.
Much luck to you. Hanna |
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dx 4/05
6 invasive ductal tumors (4 of them grade 3) TN, BRCA1+ 4AC, Bilateral mastectomy, BSO |
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Nancy
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Joined: Jul 23 2007 Location: Altoona, PA Status: Offline Points: 3814 |
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Posted: Oct 20 2008 at 4:49pm |
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SBB123,
Sweetheart....I can now breathe!!!!!!!!!!!!
I was so worried about you, and was so glad when the other gals kept posting to you. I am just the mother of a dearly loved 46 year old child dx with TNBC, but they were giving you advice from the heart.
We will all be here for you for the last 2 chemos and for the surgery. Now...if you really want good advice before and after the surgery....not just some doctor telling you what to expect, unless they have had bilateral mastectomies....and I am not saying that sarcastically, as there are some female surgeons who have had mastectomies.........just do not leave this site!!!
These gals are experts SBB, and they will tell you what to do, what to expect.
Lori has said that she will never go through chemo ever again in her life! She too is allergic to many many meds, and even though she worked through the chemo, we will never truly know what she was feeling. Her dear body, suffered, I know it did.
Much love and many many hugs
Nancy
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Nancy
DD Lori dx TNBC June 13,2007 Lumpectomy due to incorrect dx of a cyst mastectomy July 6 2007 chemo ACT all 3 every 3 weeks 6 tx Aug-Nov 28 rads ended Jan 2008 |
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Ronda
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Joined: Jul 31 2007 Location: United States Status: Offline Points: 587 |
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Posted: Oct 20 2008 at 5:31pm |
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Hey Sbb123,
Try to find Sea Bands for nausea, they are wrist band that use accupressure for nausea, they are miraculous. Wear them during and 4-5 days after chemo, I needed no nausea meds because of these cool little things!. Also be sure to drink lots of water! You want to pee alot, especially at night!
Way to go on your decision!!! Now you get to decide on your reconstruct. options. All the gals here will help!
All the best!
Ronda
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DX 3/07 IDC Trip neg, stage 2b, SN biopsy 3 node neg. No vascular invasion, Mast 4/07 AC+T DD Finshed 8/07 BRCA 1, Proph Mast 10/07. Reconst & Prophy Hyst. 10/08
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CarynRose
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Joined: Aug 04 2007 Location: Robbinsville, NJ, USA Status: Offline Points: 960 |
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Posted: Oct 20 2008 at 5:59pm |
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Sbb123,
I'm very relieved that you are opting for preventative surgery. It's hard to know how chemo will be until you are going through it, but once you are in it, options for making sure you never have to go through it again appear much more real.
When you are ready, you may want to check out a book by Kathy Steligo called The Breast Reconstruction Guidebook. You will learn a lot about all the different reconstruction types available to you. I know so many women who have had PBM's and are thrilled with their results.
I truly wish it weren't too late for me, but I'm happy that it's not for you.
Very best wishes,
Caryn
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Orig dx 6/03 - St.2a, IDC
gr.3,0 nodes, TNBC/BRCA1+ 7/07 St 4 mets to nodes/lungs. PACA/Rads NED 11/07-10/08 Lepto mets 10/08 Rads for 4 brain tumors 4/10. Leptomets return 6/10 |
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Sbb123
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Joined: Oct 10 2008 Location: United States Status: Offline Points: 11 |
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Posted: Oct 21 2008 at 2:53am |
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Thank you all for your continued support!
-Caryn thanks for the book suggestion-I will definetley read up!
All of you have been invaluable thus far!
Rhonda-thaks for info about the sea bands-I have been using both those and a special watch a friend purchased for me. They work okay-but it is the headache I can not seem to shake!
Knowing that i just have to getthrough two more treatments of "the red devil" (The A in A/C) helps.
I look forward to the day when all this is a mere memory!
-To all of you currently going through all of this stuff as well-this too shall pass!
SBB123
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Nancy
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Joined: Jul 23 2007 Location: Altoona, PA Status: Offline Points: 3814 |
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Posted: Oct 21 2008 at 7:14am |
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SBB123,
For at least 4-5 days after chemo, Lori slept in a recliner. That was a tip from someone here on the site, and is one I passed on to Lori on #2 chemo. That recliner stayed in the bedroom until after chemo #6.
That did help to alleviate the headaches. There is something about lying down flat on the bed after the chemo which "produced' the headache. However, to this day, Lori still cannot lie flat on the bed, as it gives her a headache. Lori also had Taxotere along with the AC, 6 times.
There is a list of books on the TNBC News, Resources and Tips forum, last page, and all are from the gals here on the site. The after surgery tips are there also.
Hugs,
Nancy Edited by Nancy - Oct 21 2008 at 7:21am |
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Nancy
DD Lori dx TNBC June 13,2007 Lumpectomy due to incorrect dx of a cyst mastectomy July 6 2007 chemo ACT all 3 every 3 weeks 6 tx Aug-Nov 28 rads ended Jan 2008 |
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trip2
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Joined: Jun 03 2007 Location: Under Palm Tree Status: Offline Points: 8549 |
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Posted: Oct 21 2008 at 1:02pm |
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Congratulations SBB123, it feels better once we've made a decision and it's a hard one.
Consider yourself half way thru and you can do this.
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Stage 2 2003
Stage 1 2007 BRCA 1+ |
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Sbb123
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Joined: Oct 10 2008 Location: United States Status: Offline Points: 11 |
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Posted: Oct 21 2008 at 2:43pm |
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Once again thanks for all the great suggestions and support!
Incidentally I told my brother today about my decision (he is an oncologist specializing in hematology) he too was relieved.
You are all awesome! Thank you!!!
SBB123
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hshapira
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Joined: Apr 30 2008 Location: United States Status: Offline Points: 24 |
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Posted: Oct 31 2008 at 6:05pm |
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All
Although I did not fit the guidelines for genetic testing when I was first diagnosed (only one female survived to adulthood in dad's family) I was convinced I had the mutation. The clues multi focal triple negative 4 of 6 were grade 3. When the results came in everyone was shocked. I was in some way relieved because I felt that this knowledge BRCA1 would provide a better focus in my treatment. Everyone - my doctors, my cousins who are doctors was adamant I should not put the second mastectomy off. I waited three months and the pathology result was that had I waited just a bit longer I probably would have had to endure another chemotherapy cycle. I had reconstruction - doesn't look bad. A bonus is the fact that I no longer need to wear a bra. I know that the surgery did not eliminate the risk of another breast cancer but it certainly reduced it by 95% and that gives me some peace of mind. I am, too, a professional woman and have my own business. Chemo took quite a toll specifically because of fatigue and chemo brain. But I doing really well now and probably with a much better appreciation for life and joy with every moment. It really DOES GET BETTER. Hanna |
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dx 4/05
6 invasive ductal tumors (4 of them grade 3) TN, BRCA1+ 4AC, Bilateral mastectomy, BSO |
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