Podcast: Hope After a Triple-Negative Diagnosis
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Hi Ladies,
I hope everyone is doing well. It's been quite an interesting ride so far. I had a mastectomy almost a month ago. Surgery went well...my amazing surgeon got clean margins and took out 20 lymph nodes in my axilla all positive for cancer. But thank God still stage III. Healing well and starting radiation and chemo next week. I will be doing an oral cyclophosphamide and injectable 5-FU for the 6 weeks during radiation. I still have the tumors in my clavicle to tackle...hoping and praying this combo of rads and chemo will kick this cancer to the curb!!! Feeling a lot more hopeful than 6 weeks ago!!! After rads are done...then I'll finish off the chemo and add the methotrexate to the C&F. Start tx tues sept 24....anxious but ready to win this battle! Can't wait and praying for NED!!!
Has anyone had CMF? What was it like for you? Sending hugs to you all!!!
Dana0 -
Hi Dana. I have no experience with CMF but just wanted to say I hope it works and you kick this to the curb. I know it's been a crazy ride, I sometimes cannot believe this is really happening. I'm trying to remain positive but it is challenging at times even though my husband is very supportive. I hope you have a strong support system to get you through all of this. ((Hugs))
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Hi DanaMarie,
Did you start chemo today? I started CMF almost 17 years, I'm sure it's changed a lot since then. Let's say, it wasn't a picnic, but definitely doable - my youngest wasn't even 3 at the time but we (the family) got through it. I needed to down-scale on activities, some of the "I'd like to get this done today" items didn't happen when I wanted, but I managed to find ways to make things work. My energy level wasn't as high as normal during the chemo rounds, but it does come back. Best of luck to you!
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Hello ladies, hope you don't mind if I join in. I had my mammogram in May, then a biopsy, then BMX in June. It's a long story, but I started with what the radiologist thought was DCIS and then found IDC, two tumors on the right and the DCIS on the left. Initially they thought it was ER+/PR+, mix up with the original biopsy. They only sent one of the two IDC tumors for pathology, thought they were both the same. Fortunately the MO chose to go for oncotype screening so another tissue sample from the second tumor went to California and, SURPRISE! Came back TN. I started out thinking I would be done after surgery and then some Arimidex, and then suddenly at the end of summer found out it would be chemo. I will be receiving A/C every three weeks x 4 and then Taxol weekly x12. I have had two rounds of A/C and seem to be having a constant battle with profound neutropenia (even with Neulasta). So in a nut shell, that is my story. I am 53, there is no known history of breast cancer in my family (although I have been overweight for a number of years).
I had not paid a lot of attention to the TN forum threads until recently; I have found great support on others (surgery and chemo). One of our forum groups did start a private Facebook group, that has been a fabulous source of support (for the BC in general, not the TN).
Hope you are all well and I look forward to chatting with you some more!
Martha0 -
Martha, it sucks that you didn't get correct info from the start! What's with these professionals assuming multiple tumors are the same? But you know you came to the right place, I've seen you on other threads. I was the first in my family too to get BC. Yes, I was a bit overweight, but I refuse to beat myself up about it. Also, didn't eat at well as I should, get enough exercise, I also heated food in plastic containers, even froze water in disposable plastic bottles (now know it leaches dangerous chemicals). There could be a number of causes for my BC (also exposure to harmful chemicals), the last thing I'm doing is feeling responsible for my BC as I'll never know and don't need to do that to myself. As far as our advances go, sometimes it just happens (meaning we don't know the cause).0 -
Thanks 2nd time! I have also seen you on other threads....nice talking to you! So apparently at the original biopsies the radiologist only got a piece of the side of the second tumor, and somehow it ended up in the same tube as the tissue from the first. When she called me I asked if it was worth a re-do and she said no. And apparently the insurance company says if they look the same they only send one. I can only thank God that the HER2 result was equivocal....(not clearly high or low) which then prompted the MO to send the oncotype. Otherwise I would be coasting along happily (with hair.....LOL) thinking all is well only to likely find out something very different in a couple years. I have had many, many things happen through this journey that are clearly so much more than coincidence. I can't begin to list them (I am going to journal them....I have been meaning to all summer, and never got around to it....but will start tonight or tomorrow as I am currently sitting in a hospital room with nothing else to do.....) I will be going for the genetic counseling, but had to reschedule my appointment because of the last hospitalization. They are now booked into January and will be calling me when they get the new schedule. I have already made the decision for the BMX, but need to know the BRCA status for my daughter and my son, and my brothers who have daughters too.
Take care and be well!
Martha0 -
I don't go on this board very often anymore because life moves on and things are good. But during this season of pink signs everywhere you turn I just wanted to say that I have survived TN breast cancer for 7 years. I had a double mastectomy, 16 weeks of chemo when I was 41 years old. Now I'm getting ready to turn 48 and I am healthy and happy and loving life. It killed my mom and thought for sure it would get me, but I'm still here. Keep the faith!0 -
Thank you, peapot, for your encouraging message! We appreciate your return visit to support other TNs in the community with your own experience being healthy, happy and loving life.
• The Mods0 -
So happy for you Peapot, its nice to know things are going well for you, it gives us all hope.0 -
Great news, Peapot. Thanks for the encouragement.
By the way, when they talk about five years for TNBC, is that five years from diagnosis? Neoadjuvant chemo? Surgery? I am 14 months post-diagnosis.0 -
Thank you peapot! It's encouraging to hear this.0 -
placid44 from all I have been told it is from the day they remove the cancer from your body........surgically...............but I don't agree personally because mine came back
peapot congrats0 -
Peapot that's great news....and encouragement that I really need to hear right now--deep in the midst of 6 months of chemo! Congratulations!0
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RhodyMMM I have not been out of treatment (second round and radiation) long so I know how you are feeling........hang in there.....:)
LOVE THE PROFILE PICTURE!!!0 -
Thanks Stupidboob (what's your real name?)......sadly the profile pic is/was my beloved lab Rhody who I had to put to sleep recently. I just haven't changed my avatar yet. She was my girl!0
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Rhody I had to make that decision 8 months ago when we helped our beloved Sadie Jane to the rainbow bridge and my heart is still broken. We were lucky to have her 17 years but we can never have them long enough in our hearts. I actually use her name as mine.....:) I go by Sadie and yours?0 -
Hi Sadie, my real name is Martha
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Hi Martha..........:) nice to meet you0 -
Hi Ladies,
New to the board. Was diagnosed on 8/23/13 so it's been a whirlwind the past couple of months. Passed the shock of it all then to have TNBC to boot was not good news either. I am doing my best to stay positive but it was difficult at first. I am in a better place now and I am so glad I have God in my life. I meet with my new oncologist on Tuesday and glad I switched. I was so not happy with the first team I had. We went to Seattle Cancer Care for a second opinion and they recommended this new team and I am so glad we went. Surgery went well, after 3 weeks got a bacteria infection (oh great!) so had to deal with that and now it is cleared up. So now preparing mentally for the treatments to plan for and come my way. I actually did a lot of research to make sure that I was doing the right thing. I have been and still am very concerned of the side effects of these treatments. I can't seem to wrap my head around all this and it makes me just crazy to hear that TNBC is tougher to treat.
I am putting this all in God's hands as he is right in the middle of all of this and I am so glad. I have peace now but still nervous about the treatments. I wonder what my first one will be like and if I will just freak out! I am a bit of a control freak so the unknown is a bit tough on me.
I am also wanting some input on how to prepare the home to get ready for this next phase. I have gotten a lot of great ideas that I have written down already from reading the posts here. So thank you everyone for being so kind as to share your experiences. Such a great opportunity to gain knowledge and I was able to add to my list of questions for the new onc.
Also, not sure on what all the abbreviations stand for so is there a place I can go to find the meaning so I know what they all mean?
Well I hope to hear from you all soon...Blessings Abundant0 -
SpiritBlessing, what is your total situation and your treatment plan? Can't give any suggestions as to how to get ready without a little more information. I wish you well. It's definitely an uphill battle but what's the alternative? Prayers and hugs....
Martha0 -
Hey Martha,
Could you please say a prayer for my dog Skittles.........we found out this week that she has Lymphoma............I am so SICK of CANCER0 -
SpiritBlessing I am so sorry you have been invited to the club...........I want to start off by wishing you well. One of the main things I can tell you is that no two people or their side-effects will be identical so if you can (I know you probably can't since you said you were a control freak) just listen as to not be shocked but don't think you will get everything. Tummy issues swing both ways so just be prepared for them both. You are either going to much or not enough....:) If your mouth starts hurting you do not let them tell you it is to soon, and demand magic mouthwash. Have some plastic utensils around as some chemos make things taste nasty and certain things are better with plastic. If you could be a little more specific we as to what you want to know we could help more. There is a place here with all the abbreviations but I am not sure where they are. I just learn as I go.
MO=Medical Oncologist
RO= Radiation Oncologist
BS=Breast Surgeon
NED=No evidence of disease...............
these are a few I have learned...:)
Your faith is wonderful0 -
Stupidboob, of course I will say a prayer for Skittles. I agree, I am also SO SICK OF CANCER! {{{hugs}}}
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thanks Martha............woof woof (from Skittles)0 -
Hello. I was here 3.5 years ago when my dear wife was dx with TNBC in the left breast. It was 5.2 cm, grade 3 IDC with 34/34 positive ancillary lymph nodes. She had a left mastectomy and removal of all cancerous lymph nodes. That was followed by a clinical trial with AC followed by Taxol, Gemcitabine and Avastin. Avastin continued on for 6 months while she got IMRT radiation. All clean exams since then until she started with a cough and a weakened voice. CT of neck and chest showed multiple lymph nodes all over chest especially in mediastinum. So her onc calls it mets and will start weekly Taxol and Carboplatin 3 wks on and 1 wk off. No results from other scans yet but we think they will all be clear. Anybody out there who is surviving with triple negative mets to lymph nodes only or other mets. Any new tx?
7/2/10 dx IDC 5.2cm ER- PR- Her2neu -
7/16/10 left mastectomy with axillary node dissection
11/27/13 mets to chest lymph nodes and mediastinum0 -
Sorry to hear about her mets....praying the treatment works wonders for her!!
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Thank you everyone for your post, I'm able to smile now after receiving the worst news today. THANK YOU
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Hi ladies,
I hope everyone has been doing well and is enjoying this holiday season. Sorry I've been MIA. I did start CMF on 9/24 along with radiation. Had to wait on the methotrexate until after rads. Finished 28 tx's on 10/31. Was bed ridden for about 2 weeks due to 2nd and 3rd degree radiation burns. It was awful...the worst two weeks of my life!!! The chemo intensified the rads by what felt like a million. Finished 2 cycles of C&F during rads. Then took a month break to let my burns heal. And finished 3 boosts on 11/22. Then over thanksgiving weekend...I found a lump in my right axilla. Really hard to find...even my RO had a hard time finding it. So this wed I had an ultultrasound and biopsy. Got the results today 12/6...now I have breast cancer on my right side. Don't have all the details yet. Hoping and praying its in the early stages unlike my previous cancer..for which I'm still being treated for. Started my 3rd cycle of CMF and the methotrexate was added for the first time.
Just when I thought there was a light at the end of my tunnel...I get another slap in the face. I'm so sick of f-ing cancer!! And what doesn't make sense is that I have tested negative for every genetic anomaly possible. I am more devastated about this reoccurance than my initial dx. What gives?!? Still hoping for a miracle...I just want to grow old like everyone else. I hope you all are doing well. Sending ***hugs*** and prayers to all of you. I will keep you posted. Xoxoxo
♥Dana
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Danamarei80, sorry to hear about occurrence in your right breast. It just doesn't seem fair. It makes me wonder if these chemo drugs are really working. I didn't experience any major problems or SE while on A/C or Taxol....makes me wonder if they did what they were supposed to. I will say a prayer for you that it is the early stage.0 -
DanaMarie, Hang in there!!! Life certainly doesn't seem fair sometimes, but as hard as it may be please try and stay positive - I have read many many stories of women who have fought off the tnbc more than one time and was able to be NED for many years...You keep up the good fight!! HUGS!!0
