Share Your TNBC Story
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Welcome, KatheS! Welcome to our community, and thank you so much for sharing your story with us!
The Mods
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KatheS, your story is inspirational by not giving up. I am hoping for the best for everyone. Life is too short to be worried all the time, am guilty of that but to join this forum and reading TNBC stories uplift me. I am in remission of TNBC for one year now and looking for many many more years to come.
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Hello everyone. Thank you so much for sharing your stories. I am pretty new to this and while reading research articles is informative, hearing from actual people that have gone through TNBC is what I needed and will continue to need.
As I assume my DX details will be included below this post, I'll just say that I am looking forward to my lumpectomy coming up on 11/21/19 to get this s#*t out of me. Oh, and my genetic testing was negative across the board.
My main questions, at this time, are about the type of chemo I will receive after surgery. I know that is coming first and then they are planning radiation. I don't meet with the chemo doc until 12/4/19, so in the meantime, if anyone has educated guesses on the type of drugs I'll likely be given, I would be most grateful. I will admit that I am concerned about hair loss.
I'll gladly answer any questions that I can. Much love to all you warriors
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kate, I'm sorry you have to be here but it's good you found this forum and I welcome you.. This is a very supportive community with very useful information to be gleaned. BTW There is another pretty active thread-- "calling all TNs"-- that you might also want to hop onto.
My story is on page six of this thread if you want all my details... I had a high grade basal-like TNBC, more advanced than yours, and did very well w treatment. My MO chose taxotere/ carboplatin for me (usually given to HER2+ people) but carboplatin has good results with basal or basal like TNBC (sometimes related to BRCA, and often grade 3). I found it a "doable" chemo (no picnic, but I bounced back very well between chemos till the last two).
It might be wise to have your tumor tested more completely, because different subtypes of TNBC respond to different drugs. There are also things like clinical trials which exist if your tumor has certain specific receptors and genetic traits, beyond ER, PR and HER2. AR (androgen receptor) may be relevant. PDL1 is another one which suggests specific therapies.
TNBC is one to hit hard in round one.
A silver lining of the diagnosis is that, unlike hormonally driven cancers, it actually can be cured and not return. The longer you go after treatment without a problem, the more likely you are not to have a problem ever.
It's a lot to absorb in a short time... we are here for you!!
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Thank you. This info was very helpful. I’msending you all my best.
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I was first diagnosed with triple negative cancer in the right breast in April of 2014. I had a quadrentectomy, chemo and radiation. I went to my follow up appointments faithfully every 3, then 6 months. My 5 year anniversary was Dec. 3rd of this year. Having cancer really motivated me to live well. In those 5 years we took 3 cruises, bought a lake property, went on a 21 day trip to Ireland and Scotland and a trip to Italy. I was able to retire from teaching 3 years after my treatments which has been wonderful.
In October of this year I went for my yearly mammograms on both sides and lo and behold, I was just diagnosed with a new primary triple negative cancer in my left breast! It is 9 mm, stage 1b, grade 3. This is my fourth primary cancer because I had a stage 2 colon cancer in 2008 and a melanoma on my back in 2011. My case was presented at the Cancer Board meeting at the facility where I go and the medical team is thinking that my tumor suppressor genes are not working. Does anyone have a similar situation?
I am now trying to decide if I want a lumpectomy or double mastectomy. I have appointments coming up with the geneticists and a plastic surgeon, so maybe those discussions will help me. Any suggestions on questions to ask?
Thank you.
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You can look up "restoring TP-53 function" and see what you might learn. I have a mutation on TP-53 and it may be that I have poor tumor suppressor function too though my mutation is of 'uncertain significance'-- I have had 2 melanomas, one BC and an infinitude of (minor) basal skin cancers.... OTOH, a lot of sun in childhood, and one horrible horrible sunburn in my 20s.
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Hi all,
Joining for support and encouragement🙏❤️ I am 34 yrs old and I have a 7 ur old daughter. Dx with TNBC, IDC on 11/22. I am waiting To start the “red devil” chemo in a few weeks...need to have cardiac echo, ct scans of lymph nodes because mri showed several of normal size with “thickening”....bone scans and ct scans looked good and I am just ready to start kicking this cancers butt!!! I feel like now that I know what is is and the plan I feel more at peace but still have fears. Trying to stay positive and busy, trying to clean and do as much as I can before I start chemo. Waiting on genetic testing results as well...thanks for listenening appreciate all feedback and support 🙏❤️0 -
Maryjv, so sorry to hear of your diagnosis, but welcome to this forum.
My advice is hit it as hard as you can. If you g to page 6 pf this thread, you will find my story. I had a very good response to chemo w the complimentary therapies I did. (I did a ton.) I had a honking 3 cm tumor in one lymph node too. And chemo (pre-surgery in my case) obliterated my cancer.
TNBC is unlike other BCs because it is less and less likely to recur over time. Virtually all women with 5 years clear after treatment will not get a recurrence. Most other BCs do not have this silver lining. But TNBC is very aggressive. So my point of view is do your best to kill it in round one by throwing the full arsenal at it. You want to think about diet, nutrition, lifestyle exercise, etc as well as medical as complimentary options. Consider a consult with an Integrative Oncologist to learn about all your best practices to get rid of TNBC.
Good luck and we are here for you!!
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Thank you. I will read about it. I have also had a basal cell removed on my nose.
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Thank you for your encouraging words! Will look into an integrative oncologist!0
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Maryjv how is treatment going for you?
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Hi Santabarbarbarian! Thank you for asking! I am on weekly Taxol, 10 more to go! The side effects from taxol have not been bad at all but my immune system is taking the hits! I have had a port infection (had to have it removed and replaced) and then recently developed an abscess! I am trying to move around as much as I can and eat as healthy as I can as well. I have lost 30 pounds during this time and I am trying my hardest to maintain my weight at this time! I am taking Metformin BID and B vitamins for neuropathy and I am trying fasting 1-2 days each week for chemo. I had a chest CT scan which shows I am responding to chemo...the tumor could not be measured! I am just hoping to continue to respond with Taxol and meeting with my SO 4/2 to discuss mastectomy (I did test positive for BRAD1). Praying for everyone to continue to have the strength and the fight to get through this journey. One day at a time!
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My port went south too... Hated that stupid port!! I am so, so glad to hear your tumor has been responding to chemo! That's such an incredible feeling. Hang in there!!
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I am a 42 year old mother of 2 diagnosed with breast cancer 12/26/19. I was told I have cancer in both breasts. My right breast had a minimal find of hormonal cancer, but my left breast has triple negative. My left breast started with a large fibrous mass of tissue at 40. My mammograms showed no concerns of cancer, but I was told doctors would keep an eye on it with my yearly mammograms. In October I noticed a change, my mass no longer went up and down with my monthly cycle, it was just bigger all the time. My mammogram in December showed great concerns leading to my diagnosis of triple negative cancer with at least 2 nodes involved. I have just finished 4 rounds of the Red Devil, and was told yesterday after an MRI that my tumor has grown! I’m disappointed and scared. My oncologist would like to move to surgery and then follow up with more chemotherapy and radiation.
Has anyone else experienced this? Could I have been misdiagnosed?0 -
Welcome BLR77, and thank you for sharing your story with us!
We are so sorry to hear that you're scared. We can assure you there are others here who will identify with your situation. However, we might suggest that you start your own thread here in the Triple Negative forum to help you get some advice and information from others about your specific situation. It's easy to do: just click the link to the forum, select Start a Topic, type in the subject of your post and the body, and click Submit. Don't forget to make sure you've selected to receive notifications (either with or without email notifications) when someone responds to your thread, so that you'll know when to check back.
We hope this helps and welcome again!
--The Mods
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Is it possible to switch chemos?
You might ask about Carboplatin which is effective against high grade TNBC. I was given Carboplatin and Taxotere for my TNBC. Or, perhaps you can have some testing run on the old sample to see if any actionable targets exist, like PDL1 or EFGR mutation or similar.
My tumor was 3.8 cm, multi focal and I had a 3cm tumor in axilla. My treatment left me NED.
I am sure there are some other options to try... the very reason for giving chemo before surgery is to have a sense of whether the chemo is working or not, so adjustments can be made.
Be aggressive and hang in there! Try posting in "Calling all TNs" which is an active thread.
(((hugs)))
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We are stopping chemo, this one for me has been much worse than the tough one! Neuropathy in left fingers, hemmoroid aggrevated, nose bleeds def vascular impact! I go see plastic surgery tomorrow, surgeon on Thursday and move forward with surgery! I am praying and staying positive and optimistic that this chemo was enough🙏❤️ In San Antonio I just learned this morning we have a new case at the hospital affiliated with my treatment center (dif building) and my MO tells me they are canceling elective surgeries but hope we are not impacted!
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I am a 10-year survivor of Stage III Metastatic Triple Negative Breast Cancer. I discovered a lump under my armpit in May, a few months after my last mammography. Eventually I had a PET scan which uncovered two separate cancers - one in the lymph nodes and one in the thyroid, nothing in the breasts. Both cancers were biopsied. They were unrelated cancers. I had surgery in October to remove all the lymph nodes under my left arm; cancer was in four out of 21 nodes. Then the thyroid gland was removed. It took 3 months to get a diagnosis of the lymph node cancer, and that was only by genetic testing - relatively new ten years ago.: 80% chance it was TNBC. Then I could get treatment once the doctors knew which cancer to treat me for. So after the surgery, finally the diagnosis, I had a port installed since I already was aware of the difficulties of finding veins in my arm. And then 3 months of Chemo, followed by several weeks of radiation. After the TNBC treatment was over I then also had to have radioactive treatment to get rid of any remaining thyroid tissue.
Chemo, radiation and radioactive treatment went well. No nausea - I was given anti-nausea medication at each chemo infusion. Many other side effects to all areas of the body from the chemo. Of course, loss of all hair. Coming out of it on the other side of treatment there is a new normal. And it took years for the body to settle down. Some of the side effects have remained, but are not as severe. Due to the loss of all lymph nodes in the left arm, there is lymphedema in that arm; however, it is manageable.
I wake up each morning thankful for the day. Ten years and still no signs of cancer coming back. I'm a lucky woman. By the way, I started this journey when I was 61 years old. The oncologist agreed that I was the healthiest cancer patient he had. I was his success patient. Did I tell you he specialized in pancreatic cancer. No wonder he was so happy with my outcome. He had a great, positive attitude which kept me going. Attitude is part of the success.
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Suveekay, welcome to Breastcancer.org!
Thank you for sharing your inspiring story with us and congrats to you on your 10 years! Certainly a reason to celebrate.
We're happy you decided to join us here. You will surely find our Community a helpful source of information, advice, and support while you manage your long-term effects of treatment. There is a Lymphedema forum that you may find informative.
Thank you again for joining and posting. We look forward to getting to know you!
--The Mods
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Thank you for sharing, Suveekay. I am new on this organizational site. I am 47 and newly diagnosed with triple negative, stage 2B, grade 3. Pet scan was negative for any metastases. Currently on chemotherapy (taxol and carboplatin) x 12 weeks then (adriamycin and cytoxan) x 8 weeks to be given every 2 weeks, then surgery. Since this is so new (diagnosed 3 weeks ago), I have been having anxiety and sleepless nights. And fear of outcomes. Chemo has been well, I am up and about. When I read triple negative CA, it scares me when it says it is most aggressive breast CA. I am glad to read a post of recovery of 10 years. That's amazing. Immunotherapy is being offered to me but I am not sure...Anyone had this treatment recently? Any thoughts or input would be greatly appreciated.
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Etam, this thread is not as active as "Calling All TNs" - maybe you can also post there?
Yes, it is scary to read about TNBC.... but the silver lining of its aggressiveness i that it responds much better to chemo than poky, indolent cancers do. If you can get rid of it and stay clear for 3-5 years, you will be very likely never to see it again. Hormone positive cancers can recur many years later.
Many Oncologists give Ativan for anxiety and some people find it really helpful.
Immunotherapy or anything else that boosts efficacy of chemo should be strongly considered. Be aggressive and knock it out right now!!
Good luck to you!! If you want to see my story it is on page 6 of this thread. I had a huge tumor and 3 cm lymph node at diagnosis and got a GREAT response to chemo.
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Hi~my name is Barbara. Here is my story~warning it's a long one. It began in Jan 2020. At that time I was very active, swimming laps & generally enjoying life. Sometime in Jan I noticed that I was having difficulty swimming the 60 laps I normally did. Within 2 wks I was down to 10 laps & I was very breathless. I thought it was my exercise asthma so I didn't think much about it. I went into the city & I found that I could not even walk a block without stopping to rest. It was horrible but I managed to get home ok. The next day I had a cardiologist appt. He did an echo and found that I had a massive blood clot in my right lung that was bulged out and putting pressure on my heart. This threw me into heart failure and I had ARDS. I was admitted to the hospital where I stayed for 4 days. I left having to take blood thinners for the rest of my life. Then Covid hit & I was not able to follow up on a Birad 3 growth. Covid delayed the appt till June when it was determined that the original lesion was nothing but they discovered a small suspicious growth very deep in the left breast. Nobody could feel it but it showed up on the mamo & soon. Upon biopsy, it was determined that it was an invasive stage 1, grade 3 DCIS, about 1 cm & there was a smaller growth near it. All TNBC. additionally, upon further biopsy, there was LCIS scattered throughout the area. It was decided that I would have a lumpectomy, followed by chemo & radiation. I had to have a n ICV filter inserted because of the blood clot issue. This was removed shortly before I began chemo. So 2 additional operations. The day of the surgery there was a power failure so that added to my anxiety. Also because nobody could feel the tumor I had to have a needle localization which involved a ride in an ambulance to get to the facility that could do this. I had to ride back to the hospital with what looked like 2 large knitting needles sticking out of my breast. It was horrible. Finally had the surgery & that is when they found the LCIS so the margins are small but clear. Sentinel node was clear. So I began chemo which was Taxotere & Cytoxin IN every 3 wks. I began in Sept & it ended the end of Nov. It was so toxic they had tocut it down 20% & it still was too much for me. I had and still have horrible fluid retention in my entire body. At 1 point I could not even bend over at the wait. I have not been able to wear my sneakers fro Sept till last week.It also attacked my muscles so walking was really painful & very difficult. Just this wk I can finally go up & down the stairs in the house. I really felt like I was dying.Things are getting better but super slowly. NowI am doing radiation. In the scheme of things it's not too bad. my breast is sort of burned but it's tolerable. I have 6 sessions left. Though all of this I wonder why nobody let me know that the blood clots were a warning that there was cancer somewhere. I had to ask a friend whose friend works at Johns Hopkins to tell me this.So I guess in the scheme of things I was pretty luck. It was found early and I think I got good care throughout this journey. If anyone has any questions please feel free to ask!0
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Wow I have never heard of the cancer-blood clot connection! Glad your cancer was caught fast
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Has anyone considered not having chemo?
dx: pt1b n0 m0
surgically excised with +2mm margins
6mm tumor (found by mammogram)
grade 3
tnbc/idc
Recently diagnosed and I do not want to have chemo
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Nardina, I just replied to our other post where you asked the same question. What I suggested is that you should start your own thread. I'd suggested the Just Diagnosed forum because you didn't mention in that post that you are TN. If you prefer you could start your own post here in the Triple Negative forum - pick the forum you prefer. Just click the box near the top of the page where it says "Start a new Topic".
You'll get much more attention to your question in your own thread.
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I promised myself that I would come back here if I survived TNBC. I was diagnosed at 32 with a little toddler that I was afraid of dying and leaving him in this world without a mother. But here I am... 9 years later. The toddler is now 11 and has a 5 year old sister!!! It was so hard being upbeat when all you saw was the sadness and sat in fear everyday. But .... time slowly heals. Hair grows back.. strength comes back.. and your heart starts to begin to think about future possibilities instead of thinking of death and dying 24/7. The trauma and the fear never completely go away... but you begin to live life again and find even more joy because of what you lived through. I hope that this gives even one person hope.
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Dear Calee, welcome to Breastcancer.org and thank you so much for sharing your story of hope and recovery with all of us. It's so inspiring!
We hope you will stay connected here, and we would love to hear more from you. So please, keep us all posted as to how things go for you.
Best wishes,
From the Mods
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