Hello All! Newly Diagnosed Newbie Here! |
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HoneyDawn 
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Joined: May 05 2009 Status: Offline Points: 29 |
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 Topic: Hello All! Newly Diagnosed Newbie Here!Posted: May 05 2009 at 2:46pm |
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I am a Triple Negative Grade Three BC girl. Had a clean mammo five months ago, found a lump six weeks ago, had a biopsy, and here I am.
Frankly, I had never heard of TNBC until my diagnosis. As I am sure many of you have already experienced, my whole world was cleaved in half upon diagnosis.
I'm one of those people who did everything right. Ate right, exercised, didn't smoke/drink, great weight, minimal prescribed drug usage,
etc. etc. And then...surprise!
Had the bilat MRI and will have presurgery tests this week.
My proposed course of action at this point is lumpectomy and port insertion at the end of the month, followed by a course of chemo and then radiation. My current oncologist (whom I really like) is very hopeful that I caught the sucker in time before lymph node infiltration. I will also be consulting at one of the best cancer centers in the US over the next week, for second opinions/ideas/etc.
I am very blessed to have a wonderful husband who has wonderful insurace. The support I have received from my immediate community and the medical folk in my orbit has been phenomanal and humbling. Who knew there was so much kindness from strangers? This disease is certainly an icebreaker
 Just want to say I am very grateful for this forum. Edited by HoneyDawn - May 07 2009 at 5:07am |
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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: May 05 2009 at 3:56pm |
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Hi HoneyDawn,
Gee, does this post sound familiar! Clean mammo and then you find a lump? These TNBC tumors are aggresive suckers aren't they?
 Not too many women have heard of TNBC, as the word apparently is still not out there in the community. However, considering that there were only about 150 members when I joined in July of 2007 for my daughter Lori, and now well over 1800, that is so hard to believe. My daughter Lori just turned 47, and may I ask your age? It sounds as though you are going to have a wonderful support system when you are going through treatments, and Honey, you will definitely need that. Do you have a family history of cancer, or breast cancer?
Honey, your lifestyle mirrors that of my daughter Lori's, and then as you say...surprise! She asks not why me but how me! Lori's stats are at the bottom of my post, but she was misdiagnosed as having a cyst, and then had to have another surgery for a mastectomy. Lori had surgery at Magee Women's Hospital in Pittsburgh, and chemo and rads here in Altoona where we live. You are so very wise to have a second opinion, and Lori had three, just to be certain. May I ask where you will be receiving treatments?
Well, since I have already sent you a private message, I will be waiting to hear from you so that I can email you the information that I have. Please keep us posted as to what you find out after you appointments. We are here for you every day.
 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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trip2
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Joined: Jun 03 2007 Location: Under Palm Tree Status: Offline Points: 8549 |
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Posted: May 05 2009 at 5:50pm |
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Hi we are grateful to have you join us.
There doesn't seem to be any rhyme or reason to this disease. I'm so sorry you've been diagnosed but it is good to hear those around you are being supportive, that will make such a difference.
Keep us updated on how you are doing,
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Stage 2 2003
Stage 1 2007 BRCA 1+ |
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HoneyDawn
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Posted: May 06 2009 at 12:12pm |
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Hi Pam, Thanks for the warm welcome. Y'all can be sure I'll be reading and posting on this forum.
 Though no one can ever prepare for this experience, I at least know now I have a community that will help me understand it.
Namaste and Peace
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HoneyDawn
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Posted: May 06 2009 at 12:47pm |
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Dear Nancy, First, let me say that your daughter Lori is very blessed to have a strong, loving mother in her corner. What a wonderful relationship for both of you, to share in the healing experience together.
I am in my early 50s, happily with my husband for over 30 years. Cancer in my family: paternal grandpa/prostate, but died of a heart attack; brother, bladder cancer, but died of a heart attack; first cousin on mom's side, breast cancer (not TN) but is in remission; mother, meslothemioma but still alive and kicking at 81.
My oncologist traced my family tree and told me that it just doesn't add up...that my cancer just doesn't seem to be a family thing, at least in these past two generations. I just drew the lucky number, if you will.
I was sorry to read of your daughter's misdiagnosis. Scary stuff! but happy to learn she is on the right track now.
I am in the south and will be going to H. Lee Moffitt for my second opinion, which is #16 on the US World and News Report of Best Hospitals for Cancer. If I need a third opinion, my next choice is Anderson in Houston, which is rated #1.
AT this point in time, I am uncertain as to where I will be receiving the treatments, as I just received my diagnosis on 4/30/09. At that time, my breast surgeon had only two path reports in, and was sure I had the kind of cancer that could use Herceptin (forgive me, I am still learning ). When I saw my oncologist yesterday, she was able to give me the full path reports; hence my complete diagnosis of TNBC, grade three.
I live in a small town and all my drs are at least an hour away, so I am still considering how I will approach treatment. We are hoping for a stage one diagnosis with no lymph node infiltration (isn't everyone
 ?) after surgery, but we all know it could be something completely different, so I am researching and learning and considering and learning some more.My journey went like this: Feeling very tired since the autumn of 08. Had clean mammo 10/21/08. Feeling like there was something wrong--no, KNEW there was something wrong, but I, ummm, couldn't put my finger on it (figuratively speaking), if you know what I mean. My spirit felt different, my life force felt different. During my monthly breast exam in the shower, I found the lump. It was March 12, 2009, less than FIVE months after my clean mammo.
I KNEW THEN. I knew. I knew. But not this kind.
Score one for women's intuition.
Send me any and all info. I am deeply appreciative of your kind response.
Namaste and Peace
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kathy 1223
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Joined: May 06 2009 Status: Offline Points: 7 |
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Posted: May 06 2009 at 3:48pm |
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hello all, i would like to introudce my self, i'm new to the board, and nancy is trying to help me, she is a sweetheart, i had a lumpectomy in feb, i'm going for chemo now, had 2 treatments and 2 more to go, kathy
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HoneyDawn
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Posted: May 06 2009 at 3:50pm |
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Hi Kathy, I am a major newbie myself, but I would like to say Welcome to this very special club.
How is your chemo going? What kind of "cocktail" are you having?
HoneyDawn
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SagePatientAdvocates
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Joined: Apr 15 2009 Status: Offline Points: 4748 |
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Posted: May 06 2009 at 4:03pm |
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Dear HoneyDawn,
Welcome...I am new as well... Have your doctors spoken to you about genetic counseling/testing? There was a study recently that recommended that women with early-onset triple-negative breast cancer be tested for the BRCA1+ gene mutation. My daughter was told to have a lumpectomy also and not advised about genetic counseling/testing...turns out she is BRCA1+ as I am I (she inherited it from me)... please ask your medical advisors about it..the best person to speak to on all this is a Certified Genetic Counselor... there are many women on this site who are BRCA1+ and it may have important implications for your treatment strategy.. 85% of BRCA1+ young women have TNBC. good luck to you, Steve Edited by steve - May 06 2009 at 4:04pm |
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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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kathy 1223
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Posted: May 06 2009 at 4:11pm |
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thanks dawn for the welcome. the first chemo wasn't that bad , but the second one had me down for a week, the cocktail i'm getting is tax, forgive me i don't remember how to spell it,
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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: May 06 2009 at 4:26pm |
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Kathy,
What you are getting is either Taxotere or Taxol. Is that correct? You are only receiving 4 treatments? Tell us more about your diagnosis. What was the size of you tumor, what is in your pathology report? Tell us your age...if you don't mind sharing that, and do you have a good support system at home?
Lori had ACT...Adriamyicin, Cytoxan and Taxotere. She had all 3 every 3 weeks for 6 treatments and then 28 radiations. I forgot to send you a list of the abbreviations, so wil email that to you also. It helps when the women talk about treatments and chemos, and are abbreviating many things.
The chemo tips should help you tremendously, and don't forget to print them out.
So...welcome and you are now in good hands with these amazing women and men!!
 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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kathy 1223
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Posted: May 06 2009 at 4:50pm |
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nancy i'm getting taxotere. every 3 weeks 2 more treatments to go. i'm 61 years old, my tumor was 2.5 i lost my husband in oct of 2008 thought i wasn't going to get thru this with out him, but i have a big family that have been with me every steep of the way, my mom is 85 years old and still taking care of me, i'm glad i found this board everyone to to be so supportive,
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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: May 06 2009 at 5:07pm |
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Oh Kathy,
I am so sorry for your loss, and I cannot even begin to imagine how you have coped with losing your husband and then all that comes with a diagnosis of breast cancer. Your mom must be very very special and a very strong woman. I am so glad that you have a great family and that they have been there for you.
Is the Taxotere all that you are getting for chemo? Most women have other chemo drugs with that, considering the size of your tumor. May I ask where you go for treatments? Lori went to Magee Women's Hospital in Pittsburgh for her surgeries, and then here in Altoona for chemo and rads, only because the medical oncologist and the radiology oncologist agreed with those in Pittsburgh.
If you have any questions, please just post and everyone will reply. I am really glad that you found us, and give your mom a big hug for me, and tell her I know all that she is feeling for you.
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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kathy 1223
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Posted: May 06 2009 at 5:18pm |
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nancy yes my mom to me is thebest, i had my surgey in robert woods in nj, i'm getting my chemo in toms river, im getting two drugs for the chemo but my mind is blank, after the chemo i will go for radation for 5 weeks, i have a brother that lives in town and he takes me for my treatments, so i am thankful to have a great family to get me thru this,
 kathy
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HoneyDawn
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Joined: May 05 2009 Status: Offline Points: 29 |
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Posted: May 06 2009 at 5:50pm |
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Hi Steve, When I am at Moffitt, I will talk with the drs there about it, also when I see my locals again. It is great to find a man here who is caring and compassionate. Many thanks!
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HoneyDawn
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Posted: May 06 2009 at 5:57pm |
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Kathy, SOOOOOOO sorry for the loss of your husband. Please accept my deepest sympathies. Really glad to know, sweetie, that you have a supportive family and your 85 yr old mamma is still taking care of you. She sounds fabulous! Once a mom, always a mom! Also blessings on your brother, too.
You sound like such a brave woman, I am glad we signed up together, so I can learn from you. I've heard about "chemo brain" (seems to be a common ailment) from other breast cancer survivors.
My onc suggested that if I do have stage one, grade three TNBC, that she may want to use TC. All I can do now is research and learn, won't know anything until my surgery. But your experiences are helping me understand.
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SagePatientAdvocates
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Joined: Apr 15 2009 Status: Offline Points: 4748 |
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Posted: May 06 2009 at 7:59pm |
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Dear Kathy,
I am sooooooo very sorry about your loss...I am afraid I have no brilliant words just my very sincere condolences... Dear HoneyDawn, Please try to speak to your docs at Moffit and get an appt. if you can with Rebecca Sutphen...she is a knowledgeable Certified Genetic Counselor at Moffitt.. there will also be a conference in Orlando May 15,16 that you might find interesting...if you see Rebeccca soon you can ask her about it. If you and your husband would like to come I think you would learn a lot about BRCA (which hopefully you don't have) but also the women who will be there have been through everything under the sun and I think may be helpful to you, no matter what.. if you would like to send me a PM I will respond and give you my phone number and I will be at the conference and would be happy to meet you (and your husband) and introduce you to some wonderful folks..Rebecca will be at the conference, as well.. all the best, Steve p.s. thank you for your kind words.. |
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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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kathy 1223
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Posted: May 07 2009 at 3:26am |
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thanks dawn, yes i get chemo brain a lot, i had lobular carcinoma cancer, i had a lumpectomy in feb, i have 2 more chemo to go, than radation for 5 weeks, there was cancer on my mom side of the family, also my dads sister had bc, nice meeting you, kathy1223
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kathy 1223
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Posted: May 07 2009 at 3:28am |
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thanks steve. nice of you to respond, really glad i found this board, kathy1223
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HoneyDawn
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Posted: May 07 2009 at 3:57am |
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Steve, I can't figure out how to private message you, lol. Can you private message me and then I can respond? Many thanks, HoneyDawn
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SagePatientAdvocates
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Posted: May 07 2009 at 5:36am |
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Hi HoneyDawn,
I just sent you a private message...you should be able to reply and then press send..or just call me.. I sent you my phone number and also my emails address 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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