Podcast: Hope After a Triple-Negative Diagnosis
Comments
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Teresa: Glad you feel at peace with your decision. Being stage 2, I think I would have done the same(had I been given a choice).
Meggy: Congrats on your 5-year anniversary - a fabulous milestone! You really are an inspiration and it's great you stay involved on the boards.
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Lisa thank you for posting this about your neighbor being 12 years...............I just recently found out my cancer is in my lymph nodes under the pectorial muscle up to my collar bone........:( I am terrified. I feel like I need to be at the funeral home........
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Meggy CONGRATS!!!
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Hey Gang,
It has been awhile since I was here as my mind and heart just can't handle the sad........Unfortunately staying away did not keep my cancer at bay. I am just a little short of 2 years diagnosis and it is back.....:( I AM TERRIFIED. It is behind my pectorial muscle and up to my collar bone. I had a biopsy done on Monday and awaiting the results. Looks like chemo and radiation. I just feel like I need to be at the funeral home because of how fast it showed up and that there is no surgery for it. The surgeon said to tricky an area to do surgery and that if we did the only thing we would really do is go in an remove the rest of my lymph nodes.0 -
I am 63 years of age. had lumpectomy 2 weeks ago.go to cancer dr next week. i am stage 1 grade 2 small 9mm . I am Triple negative. IDC. No lympe nodes involved.can anyone tell me will I have chemo and radiation. I am scared. thanks.
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kittytennessee I am not sure about radiation because I did not do it the first go around but I am getting ready to start it probably.......I was told that all Triple Negative Breast Cancer needs chemo, but I am not sure all doctors feel this way. I am sorry to hear that it has yet again hit someone.. Best of luck to you
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Stupidboob - I am so so sorry to hear that it returned. From what I hear, there are some really good chemo meds out there the second go around. What treatment did you do initially, and did you get a pathological clean response?
kittytennessee - wow, so small - mine started at 3+ and now with quite a few chemo treatments, it's .58. The MO said I need to keep going as part of the chemo protocol. From what I'm learning, you probably will need chemo, and I highly recommend it. Being that I'm doing neoadjuvant treatment, I can see the results. . . it works!
Good luck to both of you!!! Lauren
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Lauren I did mastectomy.......4 rounds of adramyicin (sp?) and cytoxin. Then I did 4 rounds of Taxol.
My oncologist is one that does not scan (in the process of getting a new one before we start this again) and so I was never scanned in the first place but I begged for a scan in June and all was ok (minus Iodine) so if it may have shown something I don't know. Then I went for my check-up with the surgeon in November all ok. I went for my 4 month check up with the surgeon Monday before last and the girl found it on the ultrasound and then I did a PetScan on the following Friday which revealed where it was at and then a biopsy this past Monday and we are awaiting the results of that before moving on.
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Sounds like they caught it very early on. Stay positive although I know you're very nervous!!! Sending prayers your way. Keep us posted. Lauren
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Thank you. I am here if you need to chat but send me a personal message as I don't get on here much.......I NEED TO more but when I read someone lost their battle, it just FREAKS me out
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Stupidboob: So sorry to hear about your recurrence. Good they caught it on the US. Lauren's right, there are some good tier 2 chemo options that have proven effective. Hoping you get a plan in place soon, so you can kick it the curb once and for all. Sending hugs and best wishes....
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This thread is new to me because I just found out yesterday when I saw my MO that even though I have been taking Anastrozole for over a year, he now says I am basically triple negative because my ER+ is only 2%. He even suggested taking me off because it probably isn't doing any good. I am torn because in the last year I have had a lot of hair thinning as a SE. He said maybe I should continue on until I see him again in 6 months. It's all a guess ing game and I am kinda upset this was never mentioned in the beginning of treatment!
Hi Luah...I think we met at the GTG last summer in Whitby. In fact if I remember correctly, we were sitting next to each other. Am I nuts or ? I had the bright blue top on and my hair was just growing back and was white.
Also we had yummy peach pie that Isobel brought.
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Yes, schatzi, I remember! That peach pie was delicious.
Welcome to the TN club. I'm sorry I can't help you regarding your question, but I know there are some ladies on here who are very weakly positive and have either decided to do hormone therapy or not. You could start a new thread or hop on to Calling all TNs with a query.
Why was your MO talking to you about this just now? Seems strange that he/she wouldn't have laid out the pros and cons at the beginning.
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Luah...Yeah I agree...he said I was ER+ but just a bit. Never occured to me to delve further. I read my path report and I thot it said >1.5...so I did ask and he said it was 2%...maybe he was figuring that was enough to start Arimidex. I asked again after taking it for year and he asked about any SEs. I said I was worried about bone loss and my ever hair thinning. He said "if you are concerned about those SEs, and asked me if you could stop the Anastrozole, I would say at this point, it would probably not make a difference after taking it for a year". He did want me to continue on tho for at least another 6 months until I see him again. I am really wondering if the hair and bone loss is worth it. It's a gamble. If I had terrible pain like many of the gals here, I wouldn't hesitate to stop it.
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Hi All,
I haven't been back here for a long time. But this week went in for my 18 month check up since diagnosis and all is well. I had two surgeries, one lumpectomy, one lymph node biopsy, followed by 32 radiation treatments. My onc recommended chemo, I declined. I have completely changed my diet, no sugar, processed foods, or white flour, rice, pasta. I do basically fruits, veggies, whole grains, chicken, some beef and fish. I do 15 minutes of yoga a day. (yes, I should do more, haven't gotten there yet though!) I feel fantastic. My onc was thrilled with my latest blood work, and my mammo last aug at 1 year was clear. Just wanted to give you all some hope! No, I haven't made it to "cured", but my onc was very worried when I declined chemo, and he is saying this is a milestone for me. 2 years in August will be even a bigger one! Hang in there all of you, know there are triple negatives out here praying for you, and doing great!!
Best wishes to everyone!
Deb
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Thank you so much, Deb, for letting use glimpse the light at the end of the tunnel!
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My wife Stephanie was diagnosed with triple negative breast cancer and then we found out she was pregnant 3 days later. Her true story is here - on.fb.me/XmD27U.
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Hi All,
Just seeing this for the first time. I had dx of TNBC back in 1996, told I had a VERY poor prognosis, but, guess what -- fooled them all! I'm still here!! Had 2nd dx -- completely DIFFERENT BC, NOT recurrence -- last year. So, we CAN and WILL survive!! Proof positive right here, ladies!
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I notice most women yrs out got CMF chemo.
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Maybe ac+t is the newer method so we just don't have enough 'older' ones to show the long term? At least, I hope that's what it is.
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Hi all,
Didn't realize there was a triple negative forum here.....oh well. I am currently having my third cycle of AC on Monday. Will follow my chemo regimen by a double mastectomy. They will then determine if I need more chemo and then I will finish up with radiation. Nice to see so many survivors on here! I am happy that you are past the treatments! Yes AC followed by T is the most current treatment. Not sure what they use if it is unsucessful. Maybe another combo cocktail? I am not even sure if the post mastectomy chemo is different. I would assume it will be because that means it didn't kill everything (in my case it will).
Rachel
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My chemo is post-mastectomy raehyg. AC followed by T, prophylactic because of TN status.
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Teresa,
How are you feeling? I started the day before you. Are you going every other week?
Rachel
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I'm doing all right. I had to deal with the hair thing the last couple of weeks. I do like my new wig, though. I'm doing AC every other Tuesday for two more cycles, then T for four cycles. I had a pre-cancer lower back injury for 23 years and chemo sure likes to make it worse! Other than that, just lots and lots of nausea.
I assume they are trying to shrink your tumor before they make a decision on what to do? They were going to do that with me, too, but it turns out I was just in shock. I went home and thought about it for a couple of days, did some research, and decided I didn't have to try to have a lumpectomy and save my boob, no matter what. I had gotten my head set on the first information on my first visit with my BS but the MRI after that showed that the tumor was just too large and my poor little boobie just too small to make it work. So I had the left mx but if I had known then about the TN status I would have had them take both. Now I'll just worry about the second one forever. They will be putting an implant in to try to make them symetrical afterwards and so I'm concerned about mammagrams later on. My right one has a lot of fibrocystic lumps so there's plenty to keep an eye on. They already biopsied one cyst but it came back as clear, so here's to hoping they stay that way!
Take care and it'll get better.
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Hello everyone! My 38th birthday present (March 22) was a diagnosis of right breast triple negative breast cancer. I decided to do prophylactic bilateral mastectomy April 18 and have drain's still in no reconstruction. I have an HMO insurance so I found my breast cancer early but due to insurance had to play the waiting game. Doctor's told me "don't worry its slow growing." Took weeks to get my er-pr-her results only after mastectomy was done. Now I'm waiting to see what the next step is and for an oncology appointment. Surgeon says Im stage 2b but path report says stage 3. When I found my tumor it felt much smaller at approx 2.5 cm after needle biopsy the thing exploded. Final path says 6.2cm with 1 microscopic node positive out of 22. The information on the web is not promising as far as 5 year survival and not many treatment options for us but I am looking in to alternative and conventional treatment. Improving my diet trying to cut out fat-sugar-and working towards vegetarian/vegan diet. Think I will try any and all herbs-vitamins-etc that people think work. I have two boys and alot to fight for. I'm trying not to let fear get the best of me. looking for advice!!
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Afriday.... So sorry u have to be here but these boards will help I get thru and are such s great source of info and support. I would recommend moving to the calling all TNS thread. There are a lot more ladies on there that can help u with any questions or concerns. You can do this and will get thru. I was Dx last feb tn stage 1. Had BMX in may so really it did not take all that long for u from Dx to surgery! My BS did the gammet of tests and scans ct bone MRI etc before my BMX so she knew what we were looking at. I did chemo June to nov and just had my exchange surgery in march. It was a long road but doable. Any questions u have don't hesitate to ask. Someone will be around to answer!
Hang in!
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Hi.......Happy Mothers Day to all who have kids..... I'm wanting to give a little message of hope. I am now 6 1/2 yrs out of treatment for TNBC and can still relate to all these posts like it was yesterday (AND I'm and RN)!
I had a high grade high proliferation rate cancer.....AC + 6 weeks radiation (2 nodes removed suspicious for angiolymphatic invasion) and yet here I am. And believe me I know more than I ever wanted to know about TNBC.
There is hope after dx......for me 6 years has given me my daughter married and 2 grandchildren. This is not a 'battle' this is living WITH those wiley cells that go awry everyday in our bodies. We are the lucky ones.....we know what we are dealing with.
Take time to walk in a park, forest or on the beach. Take time for peace and quiet.
Take time for joy......it does come again. XO
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psp, thanks for posting, very wise words!
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I remember when I learned I was a triple negative and I remember being rather frightened by everything I read. I had a 3.5 cm grade 3 tumor which I referred to as "Spike" after learning it was a "spiculating mass".
I had been caught completely off guard back in December 2007 when it was found during a routine mammogram. My paternal grandmother had been diagnosed with breast cancer when she was 37, had a mastectomy but sadly passed away seven years later from lung cancer. My dad was diagnosed with stage four colon cancer at age 40 so it was recommended that I start getting mammograms before I was 40.
I had no lymph node involvement but I still remember feeling pretty apprehensive about what might happen, especially after chemotherapy and radiation had ended. I opted to do a lumpectomy rather than a mastectomy and I think in my case, I made the right decions.
I remember what my oncologist told me when I talked to him about being a triple negative. He told me that the bad news was, I was a triple negative and there were no drugs for me to take after I completed chemo. Then he told me that the good news was, I was a triple negative and therefore I would not have to take drugs after chemo.
As the years have passed and I've become more and more acquainted with cancer survivors, I have come to understand this is a mixed bag. While it is true that there aren't drugs for us like tamoxifin or herceptin, we also do not have to deal with the side-effects which plague so many women who use those drugs. Also, from what I understand, overall triple negatives tend to respond better to chemotherapy. We are at higher risk for recurrence for the first few years but after that, our risk goes down dramatically.
On June 6th, it will be five years since I completed chemotherapy. I just had my latest check-up few weeks ago and things still seem to be clear. I do still have some chemo-induced neuropathy but that was exacerbated by a ruptured brain aneurysm and stroke which I had in December 2009. To tell you the truth, I've had more problems with side-effects from that than I had from chemo and radiation as that did cause short-term memory loss which I still deal with today.
As for treatment, I did not go the alternative route. That is a personal choice which only we can make. I had dose dense chemotherapy, 4 rounds of a/c and 4 rounds of taxol.
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Thank you all for sharing your stories. I was just apprx. 2 weeks short my 2 year and now back in chemo.....then I will move to radiation.........you all give me hope
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