Calling all TNs
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I am new to posting to this board, but have been lurking. I had a lumpectomy 2 weeks ago and am meeting with my MO 2/18 to discuss chemo plan. And I will need full breast radiation afterwards. I am triple negative and am stage 2A. The tumor was originally measured at 1.1 from the biopsy but was actually 2.3 after removal. No lymph node involvement.
I had a lumpectomy in March which was DCIS, but I felt a lump in the same breast right before Thanksgiving and was shocked that it was cancer. Doctors think it was probably there in March but it was not visible on the mammogram or palpable. Back in April I had brachytherapy.
I tried to go thru the NCCN guidelines. It is tough, but I think I got my preferred chemo regimens. That Holly Clegg book looks great! Will have to order that. Am looking forward to learning from and speaking to you women.
Meg
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Hey, how come my Dx, Surgery, etc list didnt show up? Or can you see it but I cant?
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Meg, welcome! This is a very supportive group. What your cancer last spring TNBC as well?
Slowloris, I gave myself neulasta shots at home after each of my AC infusions because I live so far away from treatment. It's no big deal, if you end up going that route. That's GREAT that the bumps started to go away after the first treatment! Very encouraging.
My surgery is this Thursday (Feb. 13th). After weeks of agnozing over my decisions (even though I'm following the recommendations of my doctors), I feel more at peace about things. One thing that helped was my MO (Ingrid Mayer) is one of the docs listed on the front of the NCCN guidelines book. She helped write the guidelines because she is a nationally recognized TNBC expert. I had looked at those guidelines when I first got diagnosed and saw her name there. I forgot all about it until Inspired posted about the guidelines here.
One of the things I had been struggling with about my surgery is that Dr. Mayer approved taking my port out during surgery. I know the neoadjuvant chemo has done a lot, but I was concerned that if I didn't have a pCR, I might want more chemo afterward. She's confident that I'm not going to need it. If SHE is confident, I realize I can be confident too. Her view is that I don't necessarily need a pCR to have good results. She is confident that if there is anything left, it's miniscule and radiation will handle it.
I just keep reminding myself that there was a reason I travel so far for treatment. It's the expertise of the doctors and staff.
I believe in doing my research and being my own best advocate, but I also believe Dr. Mayer knows a heck of a lot more about this disease than I do. I'm going to trust her on the port removal.
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Meg, your story is incredible! Did they run receptor status on your DCIS? If your tumor was present 6 months earlier but undetected and was 2.3cm at surgery, perhaps that means your tumor is not acting as aggressively as some TNBC tumors?
Simple - that is awesome that your Doc is one of the participants for the manual! Yes, by all means, get the port out. LOL I personally think it helps with the emotional recovery process, and your doctors I'm sure are very confident in that decision. I had my port removal booked before I was even done with chemo - had to wait 21 days though after final chemo to ensure that the counts could handle a surgery.
I'm going to repost the NCCN info in a new post, so that others can find it easily.
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Link to Download the: NCCN Clinical Practice Guidelines in Oncology (NCCN Guidelines)® Breast Cancer
http://infoonco.es/wp-content/uploads/2011/10/breast_cancer_2.2013.pdf 2013 edition - PDF 174 pages
What is the NCCN Guidelines Manual?
"The National Comprehensive Cancer Network® (NCCN®) is an alliance of 23 of the world's leading cancer centers, working together to develop treatment guidelines for most cancers, and dedicated to research that improves the quality, effectiveness, and efficiency of cancer care. NCCN offers a number of programs to give clinicians access to tools and knowledge that can help guide decision-making in the management of cancer."
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Welcome Grammy and Meg.
Thanks for that new research link, Inspired.
Well ladies......so much for trying to get my gambling fix in!!! Went to the casino Thursday and Friday. Had planned to get there early Thursday but things interfered. Didn't do much gambling either Thursday or Friday morning because I spent time with my friends (and figured I'd have Friday night).
Mom had slight cold symptoms, so I asked the NH staff to please watch her closely. Friday afternoon they called that she had pneumonia and were sending her to the ER. I called a friend to go stay with her till I could get back from the casino. I walked in to find her looking pretty good so I told her "Old Woman....I know you hate me gambling......but you gotta cut this shit out!!!"
I am a little apprehensive. She did okay the first few days she had pneumonia last time, then went into a nose dive and almost died. Realistically I know that she has used up most of the antibiotics that are available (she also only came off antibiotics 2 weeks ago) and that one of these time soon she's gonna lose the battle. I'm trying to prepare myself....but I've realized that no matter what your head does.......your heart will never be ready. All prayers for her gratefully accepted.
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Kathrynn, many prayers for your Mom. I hope she recovers fully and knocks the pneumonia out once and for all!
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Hi Jianchi,
I had a double mastectomy in April 2013 with Tram Flap reconstruction. I just had the last procedure done a couple of weeks ago. I am not sure my recovery took longer because I went through chemo six weeks after the surgery but I am still not the same. They say it takes about a year to recover. I am coming up on a year and I still have a lot of discomfort. As far as the drugs it depends on your tolerance and no you should not drive on the pain killers. I did not take pain killers very long but it was more of my lack of mobility which stopped me from driving for a couple of months which made it hard to get around. They say if you walk and exercise you will recover quicker. Everyone is difference and I wish you well with our surgery. Stay strong!
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Kathyrnn - lots of prayers coming your way for your mom. Where does your mom live in NH - we have a small cabin in Antrim.
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Simplelife just want to wish you luck this coming week - we will all be thinking of you!
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Jianchi, LPBoston mentioned something that I had neglected to --- my reconstruction was implants, which usually is only 2 surgeries (tissue expanders placement and exchange) unless you need a revision. But since I had the expanders put in at the time of my bmx, I only needed 1 additional surgery. Another thing that came to mind is that my PS had me on exercise -- I had to do this thing where I walk my hands up the wall and try to aim higher each time, etc and other mobility and range of motion exercise. I also believe driving my vehicle that didn't have power steering qualified as exercise.
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Curlylocks - I want to wish you luck this coming week - stay positive - I will be thinking of you!!!!
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Thanks for the welcomes! My DCIS was estrogen and progesterone negative, so yes, I guess it was triple negative because I was told they dont test for Herceptin with DCIS. But at the time, I asked my surgeon and she said I was not triple negative. ? Maybe she just didnt want me to worry because I was "only" DCIS. It is funny how I did feel so guilty that my first cancer was "the good one" and I almost forgot about being a BC survivor half the time. Anyway, my surgeon says we may never know how long the newer cancer was there. It could have been there a year ago, or could have just appeared. I dont think that they think it is a recurrence though. Or at least that has not been mentioned at all these appts with many doctors and second opinions.
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Kathy - I'm sending healing vibes to your mom. Please keep us posted on her recovery.
Simple - best wishes for the coming week!
Welcome, Meg...I'm so sorry you have to fight this hateful disease for the second time. You'll get plenty of encouragement and support here.
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Hi, typing from iPad and not good at it but couldn't wait to tell you all that I came across a post from Shiver Sept 2013 that says she is a 13 year survivor of TNBC and was diagnosed at age 25 .... She is 38 now. Maybe you could find out more or contact her if you needed a good reference validation from someone diagnosed at a very young age!
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From the Living Beyond Breast Cancer site, here is the August 2013 Ask the Expert: Triple-Negative Breast Cancer Highlights
Note: If you haven't read the Q&A section from this site before, when you click on the link you will see all the questions upfront, and they include a link for the answer -- however you don't have to click on them one by one. If you scroll down a little bit the questions and answers are together underneath - makes it a lot easier to read that way!
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Hi Ladies
As I am about to finish my last chemo, I get this new query in my mind, which is troubling me since a few days.
I want to ask how many of you began chemo at 21 days, post surgery?
I began at 36 days since my surgeon was out and the stitches were still in place. I recently found a link which says that delaying chemo affects survival for TNBC patients and delaying chemo beyond 60 days affects survival as much as 54 percent!!!
here is the link
http://www.washingtonpost.com/national/health-scie...
Do let me know, when you started and what your Bsurgeons say.
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BanR I too was late starting chemo because my oncologist was away. But I am doing well. I get sick of the stats because they do not mean anything really and everyone is different. You just keep going girl and you will get there late chemo or not.
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BanR: I started chrmo 35 days after surgery (gosh we are so similar!). I have read the article before, and as Cocker said and I agree, stats is just a guidline, and everybody is different.
Inspired, thank you for sharing the information on a 13 year out TNBC diagnosed at 25 years old!
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Thats true, cocker. Some relief to know that there are people you dont begin chemo within 30 days yet do well. I am so happy to see you doing so well!!! for women like me who get diagnosed under 40, tnbc behaves more aggressively than women who get diagnosed after 50.. just get worried on an off whenever i come across something new.
am looking forward to other posts which say that they began chemo late, yet doing fine.
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thanks Jianchi for the reply. Do discuss this with your oncologist next time you meet. True, we are so similar..as in age at diagnosis, type of tumor, size of tumor, grade of tumor, type of treatment, date of treatment and i think your son and my daughter are of the same age too!!! Lol!!!
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BanR - I will see my MO tomorrow, andI will sure raise this issue with him. I think he mentioned there is a window between surgery and chemo, and it is 90 days ( if I remember correctly). Tomorrow, I will ask him to test my VD level, and see what he says. Have you had that tested?
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thanks inspired for the sharing info about the lady who is 13 year out.
infact i started a thread in triple negative forum called.. long term survivors
and i was pleasantly surprised to see so many replies. There is a lady who is a 23 year, 4 times tnbc survivor. there is one more who is a 20 year survivor. and many more.... I came across an article, which i posted there, about a lady who got diagnosed at 27 and is now around 77... she is a 50 year survivor( i guess it was tnbc, since at 27 the probability of getting tnbc is higher than hormone positive cancers).
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Jianchi, what is VD level?
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Vitamin D level. Many day that BC is linked with low Vitamin D level.
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yes..i got it checked mid way. My vit level is 13 very low. Normal should be 30.
does the same chemo work better when vit d level is normal?
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I am not aware that chemo works better when D level is normal. I am taking Vitamin D now. Were you suggested to take VD?
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BanR your post confirmed that stats are not all they are cracked up to be. Half of the info is so out of date anyway. They only tell you about the percentages of this and that and so little of it applies to us. Your story of the long termer's is what I want to hear about because they give us so much hope and it keeps us going. I also get so sick of the articles saying "new hope for TNBC" or "this is what TNBC has been waiting for" then nothing comes of it. We need a cure now so don't tell us something which may and usually don't happen.
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I started chemo 5 weeks after my surgery. Initial pathology report said i was estrogen positive, had the oncotype test done and found out that I was TN. Happywe did tthe test otherwise I may have been under treated.
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thats true cocker. Once they begin trials, it typically takes 15 years for it to come into the system. Dont know when a targetted therapy will come in!! We need it asap... tnbc spreads mysteriously and the scariest part is, it mets to brain in particular and we are losing a lot of wonderful women to this disease.
jenjenl: what a lucky escape you had!!!
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