Calling all TNs
Comments
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Hi AlHusband! So good to hear from you and read your update!
Maryjv - yay!! Great news! wishing you a speedy recovery!
Hope all here are well, - and keep washing those hands !
Virtual hugs from NYC
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Stay safe NYC Girl!!
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Thanks, santabarb, - we're trying!
You stay safe, too!
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Hi there,
I'm new here. 30 years old. Diagnosed with stage 2B IDC grade 3 triple negative in the left. Biopsy for the suspicious lymph node seen on the ultrasound was negative, but I have the added spice of stage 1 in the right as well as DCIS in the form of some small calcifications on that side. I am also pregnant and have one more round of AC left before I deliver the baby and start my 12 weekly doses of taxol. Planning on a bilateral Mastectomy. BRCA1 positive and also planning on a prophylactic total hysterectomy.
A bit overwhelmed with my diagnosis and the prognosis that goes with it. My oncologist isn't the cheeriest lady in the world so she's kind of a bummer to talk to. I have a 3 1/2 year old son and want to be around for my kids as long as I possibly can. As far as I understand I would be considered stage 1 but they recently changed the staging system so the size and grade of my tumor moved me up a space. It's really comforting to read about all of you ladies who have been through this and are still living it up.
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Hawkvand, my stage went from 2B to 3C with the new rubric. But I am here-- and so far, cancer free. TNBC can respond very well to chemo. Mine did and I hope yours does too.
TNBC is hard to predict. Because there are no targeted therapies, it is seen as a bad one to get (as there is only chemo to treat it). Yet it seems to respond better to chemo than other cancers do, and if you can get rid of it with chemo, after 3 years the odds of it coming back are very low (almost zero).
Many people do get a wonderful response from chemo and the cancer is never heard from again. I hope that will be YOU. I am sorry that you have to go through all this while pregnant. You have come to the right place for support.
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I’m wondering how stats on survival coincide with the new staging system. The difference between the stages is pretty marked. The only reason I knew they changed the guidelines is because my infusion nurse printed out a form for me that said I was stage 1 and I asked one of the nps in the office about it. I have my fingers crossed that I’ll respond well to the chemo. I’m planning on asking if they want to add a platinum agent to my regimen now that we know I have the brca1 mutation since I read that tumors respond well to it in people who are BRCA positive.
In a weird way it’s good that I’m pregnant now. I wanted another and if I had gotten my diagnosis before I was pregnant we would have decided to be done. Also if I had been breastfeeding I would have probably thought it was a plugged duct and brushed it off. That’s honestly what I thought it was but I got it checked just in case. I’m obviously very happy that I did. Hopefully I caught it early enough.
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The staging re-shuffle is confusing and the survival stats apply to the old staging which you can figure out.
The truth about TNBC as well as most BC is the response to treatment is very key and can't be fully predicted. So if you have a non-resposnive cancer and are in stage 1, you are probably in worse shape than being stage 3 with a very responsive cancer.
I think adding carboplatin is a good idea. I was not BRCA but was treated as 'basal like' due to high grade and fast growth and received carboplatin.
You might also read up on/ ask about metformin, melatonin, and other things that can possibly make a difference in TNBC. High dose vitamin C is effective against cancer stem cells.
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I’ll look into those. Thanks for the tip. I’m not sure how responsive my onc will be with me asking about carboplatin but I’m gonna try. I was supposed to fly to md Anderson for a second opinion but then covid hit and it became way too dangerous of a trip. I don’t think they are planning on having me do any rad since I’m having a full mastectomy so I may be done after surgery if I’m lucky enough to get a pcr
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Hi hawkvand! Santabarbarian provides such wonderful knowledge of TNBC and how we can help to hopefully improve our outcome!! I started taking metformin and melatonin...still taking post chemo. I asked my MO about carboplantin but she did not change my treatment (same as your chemo), she says that is used with metastasis and because I was on my 3rd cycle of AC I just continued along....I did have a CT scan prior to starting taxol (which showed the tumor could no longer be measured) and then after 3 weekly taxol my chemo Was stopped because of severe side effects.. thankfully my SO called and told me pathology from mastectomy reveals complete response and no cancer was found!!! We def respond well to chemo and hopefully it’s enough to keep cancer from returning!! I am 34 and I have a 8 year old, so hoping and praying to have many many more years with her!!! Keeping you in my thoughts and prayers and can’t wait to hear about your delivery and new arrival 🙏❤️
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Hi Hawk - I was diagnosed right after my second was born, no family history of cancer, negative genetics and was totally overwhelmed. I remember wanting people just to give me something positive which I found hard to find. Step by step-day by day I did treatment and am here 6 years out. This is a great board even though I lurked for years....take care.
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Hawkvand, especially with your particular circumstances, it's understandable that you want to throw everything at the blasted cancer. Make sure that you understand the potential benefit vs. side effects of the platinum agent. Unfortunately, we can't predict who will be the "oddball" / outlier when it comes to statistics, but it can give you something quantifiable to ponder.. Mostly, I just wanted to stop by to wish you a good outcome and smooth treatment.
Lyn
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I am not a TNBC patient but ran across this article today https://www.statnews.com/2020/04/06/immunomedics-halts-clinical-trial-confirming-drug-benefit-aggressive-type-of-breast-cancer/. I couldn't read the whole article because I didn't subscribe/pay but looks pretty interesting. I thought some of you would like to see it.
Gussy
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It’s so hard for me to care about side effects at this point honestly. I know future me may think otherwise but the thought of chronic issues is not as scary as cancer right now. I did see one article that said that carboplatin increases pcr in BRCA1 patients by a lot but not overall survival by much so she may be basing it on that or thinking that we’ll see how the ACT goes first and then reassess. That idea scares me so much. I worry that somehow during treatment things are going to spread. I know that’s uncommon but man. My mind is great at imagining awful scenarios. Seeing that you only had ACT makes me feel a bit better though. So many ladies around here had other meds. I know everyone’s case is different but it makes me think we may not be doing enough
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Is there another place to get a second opinion that would ease your mind a bit? Did your onco bring your case to a tumor board where it is discussed among other dtrs to confirm treatment plan
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Hawkvand, NinjaMeow's idea is a good one. If you live in a place where getting a second opinion is possible, it might confirm for you that you're getting the right treatment or open up other possibilities. I had a friend with inflammatory breast cancer 25 years ago who was at the time part of a HMO, so seeing another doctor was going to cost money if she wanted to do it. She paid out of pocket for a second opinion at MD Anderson (saw Frankie Holmes who ran the clinical trials for Taxol that led to it being used for breast cancer and who was also the lead on the trial for Neulasta). Dr. Holmes wanted to throw everything at the cancer, including Taxol, which was very new at the time. My friend's HMO relented and agreed to treat her as Dr. Holmes suggested. At the time, death rates of IBC were extremely high. She is very much alive and cancer-free today! She had a two year old at the time, who is grown and married.
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in my area there are several large-ish hospital systems but al but 1 uses the same physician service for oncology. I was all booked to go to md Anderson for a second opinion but covid cancelled all of that. MD refuses to do a consult via telehealth which super sucks. They have already had all of my slides and scans sent to them and I don’t think they could do more tests on me anyway since I’m pregnant but they maintain that they need me to go in person if they are to see me. Insurance was going to cover it too which was going to be nice. Going anywhere for a second opinion is out now because of how close to delivery I am and the current pandemic. I’ve heard good things about my oncologist I just think I have a more aggressive mindset than they do.
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All such great advice here. I totally agree that a second opinion and a tumor board assessment would be a good idea. We only have one shot at our treatments, the doctors we choose are so crucial to our outcomes.
I was diagnosed with TNBC (BRCA1 positive) almost a year to the day that I lost my sister to TNBC. I about jumped out of my skin with fear and anxiety when I got the biopsy result. I had already had bilateral mastectomy and oopherectomy due to BRCA. So, I got TNBC after mastectomy.
Fear motivated me to consult with doctors at four different Cancer Centers within a two hour radius including Mayo, Northwestern in Chicago, UW Madison and Froedtert in Milwaukee. Having gone through my sister's subpar treatment with her, I knew I couldn't settle for the first doctor “assigned “ to me. She deserved better but she didn't get it.The MO that I decided to go with is the most brilliant and compassionate woman I've ever met. She was, and still is, my hero. Because of my BRCA mutation she added Carboplatin at the end of my ACT. I also had complete breast and chest wall radiation.
So, here I am five years later. No regrets for my treatment plan. As far as side effects, I have some annoying neuropathy, very mild controlled lymphedema and capsular contracture; really nothing too bad.
My advice to any TNBC patient; don't settle for anything, assert yourself and make sure you are heard. This is your life, make sure that the hands holding it are worthy.
All my best to you,
Rebecca
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I’m so glad to hear you’re at the 5 year mark. That’s so exciting! They do meet up for a tumor board. I haven’t actually met with my oncologist herself since I started treatment. I only saw her once during my multi-disciplinary consult. I’ve had 2 appointments since and they’ve been with the nps. One of which was a telehealth appointment. It’ll be nice to finally have an appointment with her and gauge how she feels about going for a more aggressive treatment plan. If it weren’t for covid and the baby I’d be going all over for second and third opinions but at this point I think it’s more dangerous for me to travel.
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hawkvand -
My heart really goes out to you. What a crazy time to be navigating all this. On the one hand overwhelming joy for your baby, and on the other hand the sobering fear for your health. And now Covid on top of it all.
You are right, probably not the best time to run around looking for a different doctor. Best to stay where you are.
I’m glad that the tumor board will be meeting up soon. You’ll have more answers then. Stay strong my friend, you’ve got this. If I can help with anything let me know.
Hugs,
Rebecca
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I PMd you re 2nd opinions; some docs will do them remotely. If you can get a phone consult, you might also try the big TNBC people like Melinda Telli at Stanford and Tiffany Traina at MSK.
I 100% agree that you need to be treated as aggressively as possible, without causing any long term problems for yourself. TNBC can be defeated... so you want to be a squeaky wheel to get all your questions answered to your own satisfaction early in time. There are lots of new drugs for TNBC they are just figuring out, and many things are being tested now.... it can be smart to read about them and be your own advocate and know what the next moves in the chess game are. You definitely want to hit it hard and kill it right now.
Regarding carboplatin & taxotere vs AC/T - my oncologist in CA told me that some of the preferences of certain Txs are regional. AC/T more common on east coast he said.
I did not have the BRCA gene but he felt my high grade TNBC (9 Nottingham) was basal-like and that I would benefit from Carboplatin. I had made it clear I was an athlete and did not want to have ongoing heart problems if at all possible should I live a long time. He chose Taxotere and Carboplatin for me which is often used for Her2+ people, along with Herceptin and Perjata. (TCHP). Taxotere *can* lead to permanent hair loss. Carboplatin I do not recall any big warnings about. I iced my scalp and luckily my hair came back fine. Luckily I have no ongoing problems from chemo.
Some people have weird reactions to some chemos, like allergies etc-- so it is good there are an array of possibilities.
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I did see the inbox message now. I’m still learning how to navigate the site. Thanks for dropping some names at me. I think I’m going to call my insurance Monday and see if they’ll reimburse for a second op with anyone. If not I’ll at least do a second op with Melinda telli’s group. That seems like an attractive option that isn’t as cost prohibitive. My insurance said they’d cover as many opinions as I wanted but I think the online and phone stuff may be weird to code. I may call MD Anderson again too and see if they’ve changed their teleheath policy at all. It seems like with everything going on that they’d make adjustments.
I’m definitely planning on being a squeaky wheel. My question list is quite impressive. You’ve all given me a lot more things to bring up. Thanks so much for your encouragement and experience with all of this. I think by the end of this mess I’m going to be an expert at making phone calls.
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Rebecca, wow, what a story you have. I've been PM'ing with Hawkvand and have written my MO at MD Anderson to try to get them to look at her pathology (she was all set to get a second opinion there pre-Covid). I specifically inquired about adding Carboplatin at the end of Taxol.
I have always known that it was possible to get breast cancer post-mastectomy because they can't remove all our breast tissue. But they remove the ducts, and it blows my mind to think of ductal cancer growing without ducts.
Hawkvand, there are some around here who might call me an "over-treater," but in your case I'd fight to do radiation. I had no choice because the tumor was growing into the nipple, but for me it was the easiest part of treatment, by far.
Rebecca, I am sure you miss your sister every day, but she would be so proud of you for how you fought this. It thrills me to know you ended up with an MO who is your hero.
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Hawkvand, I hope everything is moving along with your treatment plan and tumor board. You're in my thoughts and prayers. I love that the Beesy and Santa Barbara are helping you out.
Beesy, Thank you so much for your kind words about my sister. Yes, she would be proud. And even though she wasn't physically with me her spirit was fighting right along side me every step of the way. Crying and singing songs just like we did together during her fight.
I attribute getting IDC to having NS Mastectomy. I didn't want to keep my nipples but my PS dismissed my concerns and I'm ashamed to say I didn't stand my ground. Needless to say I have since changed Plastic Surgeons. They can say all they want that there is no increased incidence of developing cancer in NS, I'm the proof that there is.
Bless you for contacting MD Anderson for Hawkvand, that is so kind of you. We all need to look out for each other.
Hugs,
Rebecca
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thanks for the positive thoughts. I feel very lucky and humbled that everyone has been so amazingly helpful. I never thought strangers would care so much. I’m waiting on Stanford to call me back to set up a telehealth consult for a second opinion/chart review and hoping beesy can work some magic with MD. I tried again today and got nowhere again. I’m glad you mentioned having ns vs full mastectomy. I’m on the fence about it still.
I hope I can be as helpful and supportive to others in the future as you have all been to me.
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hawkvand-
I’m glad to hear that things are going in a good direction. Hopefully soon you’ll have more answers. We’re all here for you.
hugs,Rebecca
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When I was first diagnosed, I was not in the frame of mind to read much (I knew quite a bit about breast cancer because my mother had it in the late 90's and read voraciously then). Once I was about to start chemo, I found this site searching for methods to reduce neuropathy with Taxotere because I had a friend years ago who had terrible problems with Taxol. I learned about the practice of icing and a whole lot more! I never did participate during chemo, but boy did I read! I read the Triple Positive thread from beginning to end one night when I could not sleep because of steroids. Rebecca, I always think it's worth mentioning things like the nipple sparing mastectomy stats for those who might be reading this in the future--you just don't know who it might help. One day, a woman who can't sleep might bump into this and think to question her PS who is insisting on sparing nipples.
I haven't heard back from my MO yet, but I'm hopeful and will let you know as soon as I do!
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We TNs stick together!! There are so many wonderful TNBC sisters on this site. It is really important to hear from people who have been there, and who have had successful treatments and great outcomes. We all got help from women who walked this path before we did.
When you get through this baloney, you will help the newly diagnosed people with your knowledge and experience too.
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Hi there ... hello from Debra! Sending you all love, Hi Adagio, Sylvia, Peggy Sull, LuvtheDobies, Forward66, and ALHusband, BanR, and many others, and the new members.
Much love and healthy vibes ... tons of prayers and warm hugs, even when not posting often. Always in my heart.
XOXO,
Debra
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Hi Debra - so lovely to hear from you and to know that you are doing so well. Do you still eat the dark chocolate? For some odd reason that is something I remember about you. We are all surely in uncertain, tough, challenging times right now - and I have no doubt that our cancer journey can help us see this covid 19 through as well. Warm thoughts to all our cancer friends. Stay safe.
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Hello Debra,
You are someone I shall never forget.You were such a regular poster.It was so good to hear from you.
I was glad to know all is well with you.
I am nearing 15 years since diagnosis and have been fine.
I have also been eating 100 percent dark chocolate for many years.
Keep well
Love
Sylvia xxx
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