Calling all TNs
Comments
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Thanks, Melissa!
Lyn
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Did you get a response about LVI? I am almost 3 years out and had LVI and no response to chemo. I am holding my breath until I get to 5 years, but I’ll take 3 for now
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just had my one year follow-up PFC— all good, but I do worry since it is just an exam, no bloodwork or scans, but I am feeling well, so going to trust the professionals!
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congrats!!! So encouraging to hear you are doing so well!! 😀
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Good to hear Mncteach!
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hi Everyone;
I haven't posted for a while but follow here. I had my one years scans at the end of January, all was clear and I am feeling well. but anxious as I am 1.5 years into this scary 3-5 phase for us triple negatives. But trying to be positive, busy and active, and grateful for all I have, including this community.
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Farfalla6, what scans are you getting? I've just had mammograms since I finished treatment last year. I know there are differing opinions in the medical world about the value of other types of scans, but I'm always interested to know which ones others are getting and whether they feel they are helpful, even if only to one's mental health! And you are so right about this period of time; I feel like I'm just holding my breath until I get to five years. Only 3.5 more to go!
Wednesday I see my medical oncologist. I guess when I have an appointment coming up I always feel the pull toward these boards because my mind is going to the cancer place again. But really, I have been feeling very well, not thinking too much about it other than the constant Verzenio and Ibrance tv ads on a channel my husband likes to watch. Talk about a trigger! Oh well, there are many people who have it worse than I do. I really do count my many blessings every day.
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Hello All
I don't post much anymore, but I do lurk. I've passed my 4 year mark, going my 5th cancer free. I had triple negative inflammatory breast cancer. A beast. I'm left with some mobility issues, but have many days where I don't think about breast cancer at all.
Wishing everyone well.
Val
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Congrats Valstim!!!!!!
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I had a sonogram and a mammogram with dye injected at my one year mark, No other scans unless I have aches and pains that don't resolve in a couple of weeks. And It seems like they will do labs about twice a year; my LFTS and Alk Phosphatase were elevated during chemo but they are back to normal now.
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Popping in to say hello, and to thank you guys for sharing your stories...
I haven’t updated my profile, but have been diagnosed in the last few days with BC in both breasts: my left breast is DCIS, hormone positive; my right breast has a TN-IDC mass that feels larger than 5cm, appeared on Mammo at 4.8, and on US as 3.something... lymph nodes looked good on US... MRI Monday, port placement will be Tuesday and chemo—Carboplatin & Taxotere every three weeks x 6—will begin shortly after... (the concurrent DCIS excludes me from the Immunotherapy trials).
Info from response to chemo and genetic testing will inform my surgery options—and then surgery outcomes will drive the bus from there...
I’m terrified of chemo... have any of you had this particular magic potion? Thoughts, suggestions?
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I had carboplatin/taxotere. It was doable and not horrid. Nowhere near as bad as I would have guessed. Did not throw up. Did not have much nausea at all. MM helped with that. Dropped the zofran and STILL no nausea.
I did not find the chemos progressively worse, but I did find my fatigue was progressive.... after 4 chemos I stopped bouncing back so well between them.
After the first chemo, I fasted prior to chemo and that helped my side effects a lot.. My worst one was constipation which fasting reduced a lot. You can look up Fasting/ Dr Valter Longo, USC.
Taxotere is harsh and it is wise to ice hands feet mouth and head/hair. I did this. My hair did fall out but it grew back well.
I did several complimentary therapies and those are discussed on page 6 of members stories in the TNBC forum if you want to look into that. I kept to a keto diet except post fasting rebuild. I did interval training during chemo. Exercise is VERY helpful to SEs. Even a few blocks walk on a rotten day makes it less rotten.
My tumor was almost 4 cm and very aggressive. I had one lymph node full of cancer (3 cm) in armpit.
One things I did as get my Taxotere 8:30 am, then go back for Carbo 3-4 pm. I think that helped me too (taxotere departing my system before carbo came in..) I could do this as I live about 10 blocks from the hospital where I was treated. They taped me off and I came back after a nap.
My cancer responded really well to that Tx-- and I hope yours will also!!!
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Santabarbarian, thank you for your generous reply!!! I see my MO today, and will keep those ideas in my back pocket! I’m also interested in the integrative therapies, so will find and read your story with great interest! Thanks again!!
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TigerLily I hope it all goes smoothly for you. It is scary and nasty, but doable and you’ll come through onto the other side wiser and there will be some surprising positives too (new friends, kind strangers etc). Do you have a pet? My family and friends were very supportive when I was going through treatment and my puppy was the best friend of all, both for taking on little walks and just being with me all day. Sending you positive vibes and do let us know how you are doing or any questions. Like Santabarbarian I also took ice blocks to chemo and put them on my hands and feet during Taxol and also put ice cubes in my mouth and wore a cold cap to stop neuropathy, hair loss and gum issues. My hair still fell out quite a bit, but not completely and it grew back well and as thick as ever. I’m a few years out now, and only think about Cancer a couple of times a week, which I never thought would happen: the anxiety at the beginning was overwhelming but it really does fade.
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Hi all,
Anyone here have bilateral bc? Left side is tn , large tumor with impacted nodes and right side has 2 small er pr + . I had a red spot on my skin which is how I found my lump. Biopsy confirmed it was bc. It did lighten up on ac. Trying to find info about this and how to treat. Tumor seems to have shrunk on ac now on t with 4 treatments left. I am having some inflammation on left underarm. My onc said it is normal but I am concerned.
Thanks
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I am bilateral as well. left side is tn 2b grade 3 right side is tn 1b grade 2. For me I noticed that the left side responded well to the ac while the right didn't start shrinking until i started taxol and carboplatin. Now I'm halfway through carbo-taxol and neither are palpable. I don't have swelling to my underarm but I do have pain. I had an ultrasound to check up on things with the pain and everything came back normal which was a relief. I would push for that to check and make sure. It gave me a lot of relief and my mental state really needed that. I hope this helps some.
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Flvtgirl, You might ask about them adding carboplatin to the taxol. Carboplatin works very well against basal-like (high grade) TNBC.
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thanks for the info hawkvand and santabarbarian. I see onc tomorrow and will ask
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As you can see by my stats, I was also diagnosed with bilateral breast cancer. Right side was triple negative and left side was er/pr positive. I had seven tumors with five distinct kinds of cancer. I am three and half years out from ACT chemo and three years out from BMX. I also did 8 courses of Xeloda.
I chose not to have radiation and have not been able to stay on an AI due to side effects. So far I'm doing well.
Best wishes for continued healing.
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Hi Everyone~
I was just diagnosed with IDC on Monday. I got more pathology today indicating that I am triple negative and the cancer is grade 3.
I have appointments with both a medical oncologist and a surgical oncologist a week from today.
I am in information collecting mode. I'm glad I found this forum and am reading my way through it.
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Hi Reader - sorry you find yourself here. Best wishes for your info gathering and picking a treatment plan.
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Hello everyone. I am one of the old timers on this thread. I just popped in to leave a message of hope to the new members. I was diagnosed in 2011. In 2013, 9 months after my initial round of treatment, I relapsed. At that time, because of my quick relapse, they told me that realistically I probably had 2 1/2 to 3 years to live. I was terrified, as I was trying to outlive my elderly Mom.
Well, that was 7 years ago, and I’m still alive and kicking. Don’t ever lose hope. Many of us survive this disease for many years, and every day there are advances in treatment. Believe that you will survive
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Great to hear this! It is great to be still here. Enjoy every day.
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kathymn your story is wonderful -- thank you for sharing it! Bravo!
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Wow! Reading this made my whole night
I am 2.5 Years out from TNBC ( I am praying I can still say this in a few days; scan results soon). Thank you for sharing with us! Gives me hope.
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Here is my situation. Triple Negative plus BRCA2. Prior to the genetic test results my doctor recommended a lumpectomy with 5-6 months chemotherapy before and radiation after. I had gotten a 2nd opinion and they agreed. The 1st doctor had said there did not appear to be any spreading to the lymph nodes based on the MRI but would perform the sentinel biopsy anyway during surgery to be sure. The 2nd doctor agreed but also said if it were to spread it wouldn't necessarily go to the lymph nodes first, which contradicts the reading material they gave me. Anyway, all of that is probably moot due to the BRCA2. The 1st doctor said that result means high risks for breast and ovarian cancers plus melanoma, but the latter two can be dealt with after recovering from surgery with the removal of the ovaries and tubes. But treatment recommendation is bilateral mastectomy with optional reconstruction. If I were to have the lumpectomy instead there would any 80 percent chance of the cancer returning in that breast with the possibility of spreading to the other breast.
The survival rate I was given is 85 percent, but she didn't say how many years. A Google search tells me that survival rates are given in 5 year increments. Why is it calculated that way? Do they reassess every 5 years?
Thoughts on all of the above?
Sorry for the lengthy post.
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Dubhain, I'm really sorry you are facing all this. People here will be lovely and helpful. It's good you already have a doctor to provide second opinions. There will be others here who will have more info than I do about the BRCA2 diagnosis and consequences. Your survival expecation is based on stats for people with similar characteristics. I don't know how they calculate in the BRCA complication. My docs did not give me any survival expectation. I did use the Predict tool myself to see what the numbers look like. Even when you do this, you have to remember that, in some ways it's not very meaningful. It's based on a large pool of patients, not on you. But it does give some sense of it for you.
Here is a link to the tool. Note the invasive tumor size is in millimeters, not centimeters. So if your tumor size is 1.8cm, for instance, that's 18mm. Assume the chemo you're using is a 3rd generation variety. Also you'll see the results can be displayed in a variety of ways. I encourage you to look at all of them, so you can find the one that makes the most sense for you.
https://breast.predict.nhs.uk/tool
Take a look and then ask more questions. Good luck.
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In addition to using that tool that MountainMia has referenced, you can use this tool to evaluate your BRCA2 statistics:
http://brcatool.stanford.edu/brca.html
You can specify your type of monitoring and your age at diagnosis and age when you would have a BMX and ovary removal. It will give you the risks by age 70, with or without mastectomy and ovary removal.
The "predict "tool is more meaningful to evaluate your current situation with respect to size and lymph node involvement, and the brca one is more relevant for your long term planning. Since triple negative tumors will pretty much always be treated by chemo if they are larger than 0.5cm, there isn't really much for you to decide in the short term. The main decision you need to make is if you are going for the BMX given your BRCA2 or not. I have a friend who is BRCA 2 and triple negative without lymph node involvement and only had lumpectomy and radiation, with tight monitoring, one MRI per year and one mammogram per year. I feel from reading here, that most people decide for BMX though with BRCA2. But in the end it is your decision to make.
Good luck and you will get through this!
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just a comment on spread - it does not only spread through lymph, it can spread in blood & you can have metastatic spread without disease in the breast or lymph nodes. Surgeons check/remove lymph nodes as it's a common initial spreading site but your 2nd Dr is also correct.
All the calculators are useful for estimating incidence in whole populations but it's hard to know how it will play out for us as individuals. overall ~30% of early stagers will at some point develop metastatic disease. & mastectomy doesn't prevent metastatic return, only locoregional
Lots of things to think about & digest. Once you make a decision, don't look back and 2nd guess it. And hang in there; once you have a plan, it becomes less stressful
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The stats get you part way but not all the way, because the single most important factor is response to chemo, which is hard to predict with TNBC due to the different subtypes of the TNBC as well as the differing immune systems of the patients.
Also important: survival for TNBC is VERY good for the women who get past 3-5 years with no recurrences. My MO told me he personally had never had a TNBC woman who recurred after having 3 years clear; recurrence is usually quick if it happens. So as daunting as TNBC can seem, there is the silver lining of getting to be "done," and pass out of the window of recurrence. Of course one can still get a new primary.
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