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MrsLyons
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Topic: Newly Married...Newly Diagnosed Posted: Nov 27 2010 at 11:05pm |
Hello,
I hope everyone had a wonderful Thanksgiving. I made my first turkey this year! Being in the kitchen, cooking away, was a great escape from the C-word. I'm so proud of that darn turkey, which is weird, because I have always considered myself a career woman. I usually do all I can to stay away from anything associated with domestic duties. But, for some reason, I am drawn to them right now. I can't stay out of the kitchen and I can't stop cleaning!
I was diagnosed with IDC in my right breast about a month ago. I found the lump on our honeymoon after my new husband and I got a couples massage in Maui. I loved every second of that honeymoon and I dreaded coming home to the mammogram I had scheduled upon discovery. As soon as I felt the lump, I knew it was cancer. I tested positive for BRCA1 when I was 18...I'm now 32. I thought I had a couple more years to consider prophylactic mastectomy, but I was wrong.
We've been through a rough few weeks, as I'm sure many of you know first hand. We found out it was TNBC two weeks ago and I had my port and sentinol node biopsy one week ago. We were told there is at least one lymph node involved the night before Thanksgiving. I am hoping to start chemo in a few weeks, but we are at the mercy of my reproductive system, which is being stubborn. The holding pattern is for the egg harvesting process...we'd like to secure some hope to have children in a few years. It's a frustrating wait, but I hope we can make it work...it would make this whole process a little less scary.
Thank you for this forum...it's comforting to read these posts. I know it's not the best of circumstances, but there is strength in numbers.
Have a great night, MrsLyons
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SagePatientAdvocates
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Posted: Nov 27 2010 at 11:41pm |
Dear Mrs. Lyons,
welcome to our family..congrats on your marriage and your Turkey..
My daughter was trying to get pregnant when she was dx with TNBC when she was 36, six years ago. Post her first surgery she went to an IVF specialist. She had been trying to become pregnant when she was dx and wanted to do everything she could to have a child. There was a six week window between her first surgery, a quadrantectomy and the start of chemo and the IVF specialist recommended a massive dose of Clomid to harvest as many eggs as possible..
"What about my daughter's risk turns on another cancer? we don't know if she has cancer cells circulating in her body...her cancer was invasive..."...the doctor's response..."I don't know anything about BRCA or TNBC..you came to me because you want a child..that's my expertise, no BRCA.." we checked with her oncologist who recommended against the massive Clomid dose and the 'normal' harvesting was not successful, unfortunately.
Mrs. Lyons, please make sure that if you see a fertility specialist you find one who is also knowledgeable about the BRCA mutation..
Also please ask your oncologist about parp inhibitors...which are in clinical trials and seem to be effective at times for BRCA+ women with TNBC.
If you are not being seem there already I would recommend seeing a Breast Medical Oncologist at MD Anderson in Houston...
good luck to you...very sorry about your diagnosis and we shall be here for you.
in your corner,
Steve
my BRCA story-
http://ww5.komen.org/breastcancer/SteveK.html
Edited by steve - Nov 27 2010 at 11:46pm
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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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123Donna
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Posted: Nov 27 2010 at 11:50pm |
Hello and I'm glad you found us. This site is truly a wonderful support group to help us through this journey. I'm so sorry about your situation, finding the lump on your honeymoon. How this must have turned your world upside down. I know it did for me. I'm glad you were able to enjoy your Thanksgiving. The little things in life are sometimes the most precious, like cooking a wonderful meal for the family. Did they tell you the size of your tumor? What type of chemo are they recommending? Please feel free to post your questions. There is always someone that will come along with great advice. Please check out the TNBC News, Resources, Tips Forum for some great information and posts: http://forum.tnbcfoundation.org/tnbc-news-resources-tips_forum6.htmlAlso, have you had your Vitamin D level checked? Most of us have extremely low levels at diagnosis. http://forum.tnbcfoundation.org/vitamin-d3_topic5338_page1.html?KW=Vitamin+D3Donna
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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
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nmunoz
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Posted: Nov 27 2010 at 11:58pm |
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Dear Mrs. Lyons,
I'm sorry about the circumstances that led you to this place, but I am happy to see that you found us. I have found tons of information and support here and as you will find we have a wonderful and loving community that really cares for everyine here.
I was also diagnosed at 32 a couple of years ago and as you I am BRCA1. I found a lump while breastfeeding my first child when he was 6 months old. I also faced the fertility issues when I was deciding about my treatment and at moment I decided to focus on my cancer treatment as I had been already blessed with a child and I just wanted at that point to take care of the cancer to make sure I could be there for my son. We are now facing new questions as we would love to have another child and we are now trying to decide if and when it would be right for us to try again...
What I can tell you is that so far it seems that fertility wise I did fine despite not having done anything to protect it prior to treatment. Time is on our side at this point as the younger you are the less likely chemo is to affect your fertility. I stopped having my period after my first chemo treatment and got it back almost a year after I finished it. Because of the BRCA+ thing I am under special surveillance for my ovaries (while I get rid of them too...)and so far it seems like they are working fine but I guess the test time will come when we decide to try again. This thing faces us with so many decisions but this is where this place had proved invaluable to me as it has allowed me to find the information and support I have needed to make them.
Please feel free to send me a private message if you have any questions or would just like to talk. We are here for you.
Best,
Natalia
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Natalia, 38 years
Dx TNBC 10/22/08, BRCA1+
Double Mx 11/20/08 with Recon.
3/37 nodes
Rads 7 weeks done 8/09
ACx4 every 2 weeks and Tx12 weeks. Avastin e/3 weeksx10 (Clinical Trial) Done Dec/09
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LRM216
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Posted: Nov 28 2010 at 12:38pm |
MrsLyons,
Best wishes to you and hubby on your recent marriage. I am so sorry to hear that this happiness had to be marred by your finding a lump in your breast. Not exactly how we plan the early part of our marriage and new life to begin, but life throws some undaunting arrows when we least expect them.
Glad you found us and know that you have found a wonderful, compassionate and very learned group of women, along with our harem master, Steve (who is a compendium of information and compassion that we all have been blessed with), who will guide you every step of the way and be here for you now, later and then some more!
Wishing you a kind and uneventful journey in your treatment. God bless.
Linda
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Linda - diagnosed at age 62
Diag 2/23/09 IDC 1.2 cent. IDC right breast,Stage 1, Grade 3,0/1 nodes - Triple Neg
4 DD AC every two weeks, 1 Dd Taxol, then 3 Taxotere every three weeks - rads x 33
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TracyAMac
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Joined: Aug 01 2010
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Posted: Nov 28 2010 at 12:59pm |
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Hello and welcome Mrs Lyons!
Congrats. on your marriage. Sorry you have had to join our site but as others say it is a wonderful source of support. Steve is suggesting good advice about checking out all the angles re fertility, options and risks.
I had no problem getting pregnant in my late 20s and mid thirties after extended and intensive doses of AC, Methotrexate and Cytoxcen for bone cancer when I was 17/18. with osteosarcoma (bone cancer in my leg). I also underwent several rounds of IVF treatments (ICSI) in my thirties (my husband is a paraplegic) and we now have two lovely almost 13 year old boy/girl twins. I sometimes wonder if the fertility treatments had anything to do with my BC diagnosis earlier this year by my onc. is more concerned about the potential link of my different cancers and possibly having Li Fraumeni Syndrome and/or the p53 mutation - he doesn't seemed fussed about prior fertility drugs.
Glad you joined this site and if I can be of any assistance or support, just let me know
Tracy in Toronto
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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
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trip2
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Posted: Nov 28 2010 at 2:03pm |
Hello Mrs. Lyons, I too would like to congratulate you on your new marriage and wish you many many years of happiness together!
I'm very sorry to read you are now dealing with this but think you will find much support here, we will help however we can so hope you continue to update us on what is going on, maybe share a bit more about your pathology, what they are planning to do as far as treatment is concerned.
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Stage 2 2003
Stage 1 2007
BRCA 1+
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Carol (Tenn)
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Posted: Nov 28 2010 at 6:14pm |
Hello Mrs. Lyons,
Congratulations on your marriage and so sad this news had to come in the middle of your honeymoon.
I wish you and your husband many happy years together.
It's so unfortunate that you have need of this site but under the circumstances you couldn't have found a better place to share your feelings and receive loving caring responses to your posts. I would also like to invite you to join us at the Spiritual Support thread if that is something you might be interested in.
Again welcome....hope to hear from you again soon.
Love and Prayers,
Carol
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St 2 Gr 3, A/C/T, DD Radiation x35 Rec chest wall 07/09 Radiation x28 NED 10/24/11 NED 10/5/12 NED 03/15/13
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nmunoz
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Posted: Nov 28 2010 at 11:35pm |
Hi,
I forgot to mention a wonderful resource for young women facing breast cancer which has information on fertility issues (including forum discussions) that you may want to check out:
http://www.youngsurvival.org/
Best,
Natalia
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Natalia, 38 years
Dx TNBC 10/22/08, BRCA1+
Double Mx 11/20/08 with Recon.
3/37 nodes
Rads 7 weeks done 8/09
ACx4 every 2 weeks and Tx12 weeks. Avastin e/3 weeksx10 (Clinical Trial) Done Dec/09
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dmwolf
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Posted: Nov 29 2010 at 1:30pm |
MrsLyons, Pam posted this article on research suggesting that it having BRCA mutation is a survival advantage (maybe this will hep ease your fears): Women With Both Triple Negative Breast Cancer And BRCA Mutations Have Lower Risk Of Recurrence
Patients with triple negative breast cancer
that also have mutations in the BRCA gene appear to have a lower risk
of recurrence, compared to those with the same disease without the
deleterious genetic mutation, according to researchers at The University
of Texas MD Anderson Cancer Center.
The findings may offer a direction for study of personalized
therapy in this select group of triple negative breast cancer patients,
as well as highlight the unique need for genetic testing in a patient
population. Ana M. Gonzalez-Angulo, M.D., associate professor in MD
Anderson's Departments of Breast Medical Oncology and Systems Biology
presented the findings in advance of the 2010 Breast Cancer Symposium.
"There is data on the number of breast cancer patients with BRCA
mutations, as well as those that have triple negative disease. However,
there is no understanding of the incidence of BRCA1 and 2 mutations in
unselected patients with triple negative breast cancer," said
Gonzalez-Angulo, the study's first and corresponding author. "Now, there
are new drugs that appear to be more effective in treating triple
negative breast cancer and BRCA status may be an important way of
selecting patients that may respond to these therapies."
Triple negative disease - breast cancer that is estrogen,
progesterone and HER2-neu receptor negative - accounts for about 15
percent of all breast cancers. Currently, it's an area of much research
focus in the breast cancer community because: it lacks effective targets
effective for anti-cancer therapies; chemotherapy is only effective in
about 40 percent of patients; and in those that do relapse, the disease
is highly resistant and patients die quickly.
PARP inhibitors, a class of drugs of growing interest in cancer
research, have shown promise in both patients with BRCA and triple
negative disease. PARPs appear to be more effective in patients with
BRCA mutations, as both PARP enzymes and proteins produced by the BRCA
genes are involved in the repair of DNA. Therefore, the MD Anderson
finding may provide an early idea of how to select those triple negative
breast cancer patients that may respond best to therapy.
For this study, part of Gonzalez-Angulo's ongoing laboratory
project, Molecular Characterization of Triple Negative Breast Cancer,
the researchers sent both tumor and normal tissue of 77 women with
triple negative disease to Myriad Genetics Inc. to identify germline
(inherited) and somatic (in tumor only) BRCA mutations. Of those 77
patients, 15 (19.5 percent), were found to have mutations (14 germline,
one somatic) -12 (15.6 percent) with BRCA1 and three (3.9 percent) with
BRCA2.
The triple negative breast cancer patients were treated at MD
Anderson between 1987 and 2006, and all but one received the same
adjuvant chemotherapy regimen. The median follow-up was 43 months. The
five-year relapse-free and five-year overall survival of the patients
with either BRCA mutation, was 86,2 percent, and 73.3 percent,
respectively, compared to 51.7 percent and 52.8 percent, respectively,
in patients lacking mutations.
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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.
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MrsLyons
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Posted: Nov 29 2010 at 4:07pm |
Hello All,
Thank you so much for your responses, I really appreciate the time and consideration you all have taken.
I met with my Oncologist this morning and asked her about the fertility. She seems to think it's a good idea to go ahead with it, as the plan they have me on is the protocol for women with BC. They are not giving me large doses of clomid, but I am going to taking a few small doses of Follistim/letrazole (similar drugs, I believe)...and they are keeping my estrogen levels as low as possible (eventhough, its a tnbc). We've decided that although they won't be able to get as many eggs with this method (lower dose), at least they can get a few and we'll have a shot if we can't make it happen the natural way in a few years. The drugs they are using are Certritide (to prevent premature ovulation) and Follistim and Letrazole (to stimulate the follicle).
My Oncologist is eager to get started, but said this is the best course of action and we're looking at a Chemo start date of Dec. 14. My chemo will be Adriamycin and Cytoxan, dose dense for 4 cycles. Then Taxol every week for 12 weeks. I got my path report back today on my sentinol node biopsy...one of nine nodes reveals metastatic adenocarcinona with no evidence of capsular invasion. So, she's set me at a clinical Stage IIIa, tn-IDC. (I'm not sure I'm getting all the acronymns right, but I'm learning.)
I asked about the PARP inhibitors, but right now the trial is only open for those with metastaic TNBC. Luckily, I am not in that category, but my doctor said she'd like to be able to put them on my protocol.
Again, I really appreciate the out-reach...this a great forum and a great group of people. Thank you for your concern and I wish all the best to each of you!!
Thanks!
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zoomommy2
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Posted: Nov 29 2010 at 4:28pm |
Mrs. Lyons,
Congratulations on your marriage! Thankfully, you found the lump early. You will be having the same chemo many of us have had. You are lucky to be getting educated early in the fight. I hope you are able to have the children you want in the future after this fight is over. Best of luck.
Lee in Denver
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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
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123Donna
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Posted: Nov 29 2010 at 8:18pm |
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Mrs. Lyons,
I just entered the Parp lottery after having a recurrence in a lymph node. It's also available for locally advanced, which lymph node involvement should put you in that category. I'm just mentioning this in case it is something you'd like to pursue with your oncologist. The Parp lottery that I hope to get into is the one by Bi-Par Sciences.
Good luck with the egg harvest. I hope all goes well.
Donna
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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
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SagePatientAdvocates
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Posted: Nov 29 2010 at 10:50pm |
Dear Mrs. Lyons,
This is a very tough post for me to write....first off, I am not a doctor so you should not rely on anything I say...Second of all, I am a father of six and I adore children so this post is extremely difficult to write.
it seems, at times, there is something called PABC (pregnancy associated breast cancer) with women getting TNBC while pregnant, while nursing or in the first year post-pregnancy. I understand you are harvesting eggs not seeking to get pregnant now but, in principle, my daughter and I were told there were problems with drugs that stimulated ovulation induction.
I think you should get a second opinion regarding using the Follistim/letrazole...Intuitively, it scares me, particularly with a positive lymph node...
Again, I am not a doc and I may be all wet on my concerns...I understand that Follistim/letrazole are not Clomid but I would still feel more comfortable if you got a second opinion from an expert in TNBC, and I am not saying your physician is not an expert...just would feel more comfortable with another opinion.
If you are not presently seeing anyone at MD Anderson in Houston I would suggest seeking a second opinion there..
if you would like to talk please send me a PM and put Mrs. Lyons as subject.
sorry to bring my concerns up..
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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trip2
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Posted: Nov 30 2010 at 7:57pm |
It's good to hear from you Mrs. Lyons and hope all of this gets settled for you soon. Hope your chemotherapy journey is a smooth one, please check out our chemo tips which might help especially now in getting prepared.
This might help in reading your pathology report, hope you have a copy, get copies of everything for your personal file.
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Stage 2 2003
Stage 1 2007
BRCA 1+
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abcmom
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Posted: Nov 30 2010 at 8:59pm |
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Welcome, Mrs. Lyons and congratulations on your marriage. Sorry you have cause to be here, but glad you found us. It is a wonderful group of people here! Please know that we are praying for you.
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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
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MrsLyons
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Posted: Dec 11 2010 at 10:08am |
Hello Everyone!
Thank you, thank you, thank you for all your encouragement and advice. I want you all to know that I took every word serisously and to heart. In the end, I decided to go forward with the IVF. I just had to do it for my own personal reasons.
So, I am having egg retrieval tomorrow and I start chemo first thing on Monday morning.
I've also updated my stats in my signature...I hope I did that right. Donna, I stole your format...hope you don't mind! :)
I read a lot of the chemo tips and I think I'm ready to go. I have all my meds and invested in Biotene and Magic Mouthwash as well. I don't know why, but I'm very nervous about the inner-mouth sores. So, I'm trying to be as proactive as possible. I've also bought a lot of cream-soups, as I've heard these can be easier to eat than some other things. I cut off all my hair too. I used to have hair past my shoulders, but now it's super short , sassy and ready to be buzzed off when it starts to fall out. So, here we go! Bring it on!! I'm ready!!
I'll keep everyone posted on my progress and thank you again for all the support. This is a wonderful community!
Have a great weekend,
Mrs. Lyons
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DX IDC TNBC 11/10 age 32, Stage 3a, Grade 3, 3.5 cm, 1/9 nodes, Right, KI-67 91%, BRCA-1, ACx4 (12/13/10) followed by TXx12, BMX w/expanders (6/1/2011), Rads begin 7/11/11
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rigatonismom
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Posted: Dec 11 2010 at 10:29am |
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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
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123Donna
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Posted: Dec 11 2010 at 11:34am |
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I'm glad you did the IVF. This journey is your own and you need to do what you think is best for you. It sure will give you more options down the road with harvesting the eggs. You have a great positive attitude and it will help you face this beast. The chemo nurses are wonderful. Don't feel shy and ask them any question you have or concerns. Good luck and let us know how you do on Monday.
Donna
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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
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Carol (Tenn)
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Posted: Dec 11 2010 at 11:45am |
Wow...what spirit and determination! I salute you ....
I know you will do well and that you are totally prepared to fight the fight.
If you need anything, don't hesitate to ask and we will help anyway we can.
I, myself, will be praying for you each and everyday, and at SS, (Spiritual Support thread) as we do all of our sisters in this journey with us.
Love and Prayers,
Carol
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St 2 Gr 3, A/C/T, DD Radiation x35 Rec chest wall 07/09 Radiation x28 NED 10/24/11 NED 10/5/12 NED 03/15/13
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