Looking for Her2 Positive survivor stories
Comments
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hi . Anyone here had fat necrosis after surgery? I started nearly immediately after the surgery. Redness went away but the hard mass in my healthy bressr (I had prophylactic surgery plus reconstruction on my healthy breast) stayed and I think became bigger. My surgeons told me it is probably fat necrosis but my mammogram, the 1st after the surgery, was pushed to June due to the panoramic. I hope it is a just fat necrosis. But it is not confortable to have a hard m’y in the breast. If you had it, how long it took to go away or what I can do to make it go away or decrease the sizeThanks
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Hi
Anyone here who also had TCH as neo adjuvant chemo and is now NED for quite some time/years? I really need some encouragement for my mom. Thank you!0 -
I think I'm confused here. I was diagnosed in late 2018 with cribriform DCIS with comedonecrosis stage 0 and strong intensity 100 positive Estrogen and Progesterone. Both BS and Oncologist suggested meds for being hormone positive along with rads after a lumpectomy. I had the lumpectomy but for fear of the side effects with meds and rads I chose not to do either. I felt comfortable with that choice since my docs did not seem too concerned and did not push it. So now here I sit 18 months later facing another biopsy tomorrow due to the 18 month mammo showing more calcifications in a different area of the original DCIS. After reading through so much on this site I feel that I was mislead to think that I would have a reoccurrence. There wasn't a single healthcare provider that told me that HER2+ was going to be an issue moving forward. I know now that I may have made some wrong choices and that if my biopsy shows more cancer cells I will have a dbl mastectomy.
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Technically, DCIS is a precancerous condition, because the cells cannot survive outside of the ductal system. It is not a true cancer. If your biopsy shows more DCIS, then it is altogether reasonable to have a mastectomy. Once is excusable, but if the breast offends you twice, have it cut off. Rads and antihormonals after is a good choice, but forgive yourself for not having made the choice in the first place. If the cells have mutated so that they can live outside the ductal system, chemo and antihormonals are good choices.
HER2+ is rare, and it is not likely that you have it. It could be HER2+, but don't worry about it so far ahead of the game. With the meds available now, HER2+ is not the worst news one could have.
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Although I didn't have TCH adjunctively, I had it after surgery and it was very doable. I'm 11 years out so there's hope!
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QueenB - don’t beat yourself up. Hopefully this is nothing but at least you are armed with more knowledge- especially about HER2.
Good luck with your biopsy
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Thought I would come by here and let you know I am 4 years without any cancer, well 3 if you calculate from when my treatment was finished. Remember I came to this thread to get some hope since I thought I was not going to make it this long so just giving back keeping my fingers crossed this will continue. Remember most people that have gotten well do not stay around this web site much and so will most likely you too.
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Margun - I have fat necrosis - popped up right after my year of chemo. I just about panicked. My surgeon was so calm and straight forward, he kept me from flying into the crazy zone. I'm now 6 years out from diagnosis and I have two palpable lumps - both fat. My surgeon ultrasounded them several times and biopsied the bigger one to confirm his suspicion - fat. They are in the right place to be seen on a mammo and I've pointed them out every time only to be confirmed that they're fat. At times they hurt (scar tissue) so I stretch the area and massage. All good - I can live with this.
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Like Kattiss, I'm here to post a positive encouragement to anyone who finds herself in a bad spot. Two years ago this month I finished radiation treatment. I just visited my oncologist and got that all clear for another 6 months.
For reference, I started neo Adjudavant treatment with TCHP in December, after initial stage IIIc.
I had bilateral mastectomy in April, PCR (yeah!), then finished a year on Herceptin and Perjeta. It took the better part of a year before I felt myself again, for my hair and nails and skin to look decent.
Now days go by when I don't think about it. My fatigue and weakness have gone away. I hiked the Grand Canyon, I skied again and I paddle without a problem. I'll be 49 this summer.
Good luck to all of you!
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I am taking letrozole for 9 months. Joint pain became worse la. I do not know if is the rule or eventually gets better. It is worse in my hand and fingers on the operated side so I do not know if is a combination of all. I have also upper arm discomfort for 3 weeks now. in particular when I stretch. I do not know the cause. Will it go away or not? Is is a sign of lymphadema? I have no swelling.
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Margun - Could you go to My Profile and enter your prior diagnosis & treatment? I don't know enough about what you've been through to comment. How old are you? Did you have rads? Did they take SNB?
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Pop into this site periodically, and remember you very well. We were diagnosed and treated same time frame. Glad you are doing well. I had abnormal mammogram last Thursday, and go back for diagnostic one tomorrow in the same breast. Fingers crossed; hate the waiting!
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I'm HER2 positive. My original mammogram showed a tumor that was grape size. My surgery/lumpectomy was 3 weeks later but within 3 weeks it had grown to lemon size. Fortunately, it did not spread to lymph nodes and my margins were clear. With that said, I still had 6 rounds of 10 hr chemo combined with 19 rounds of radiation and an entire year of Herceptin. I've now had my port removed and my onc started my on Letrozole. The side effects were to harsh on my muscle/joints. I'm currently on Exemestane. Although this drug is not perfect, with daily stretching and exercise my joint pain is minimal.
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DoubleG - odd that they didn't do chemo first since you're HER2+. That is the usual sequence - stop the growth & hope the tumors are smaller before surgery. Glad the worst is over.
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Hi
I have a question
to those who had TCH before undergoing surgery.My mom is about to have her
last infusion (6th) of TCH. And now, she complains of having a back pain
whenever she does something that requires extra energy like exercising or doing
some light house chores. She gets tired easily too. But thankfully, it goes
away after she gets some rest. I can't help but worry and overthink if it
could've been a bone mets already
Did you also experienced this during your
treatment before? Is this just normal and nothing to worry about?Thank you!
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fighting - I answered the same question you asked on another thread. I wouldn't worry. But do go to My Profile and enter the diagnosis & treatment.
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As a matter of fact, I just answered questions for you on TWO other sites. It's a good idea to pick one thread and post there consistently. That way members can follow the progress.
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Popping into BCO today to celebrate my 15th year with NED.
The uncertainty that this day would come was hard in the first few years.
i am grieving the loss of some of my fellow BC survivors over these years,
I am grateful to see my teenagers become adults.
Be strong and stay hopeful that those who care for you will help you at each step you make going forward.
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Thank you for coming back to post. I'm dealing with a few minor health issues, but 4 years out myself. I hope to share your good fortune and experience the rewards (and aches) of growing old.
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Thanks for posting Maryanne.
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jo6329,
My dr took me off the Hormone blockers when I did the second round of Kadcyla. It didnt work so I have metastisized cells in multiple sites. Will be going on EnHertu as soon as all the tests are finished (Echo for heart, 2 MRI's to prep for two separate sets of 5 rad treatments. Will be losing my hair again and it feels like I am in a dejavu of 2017. Thanks for asking. I am not looking forward to this but the sooner I start the sooner its over and we view the results. Case studies on this new therapy are very positive.
AngelsGal
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AngelsGal57 - Sorry you have to go through all of this again. Keep positive and it sounds good that the case studies on the new therapy are good. Keep us posted on your treatment.
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Hello beauties! I am jumping in to say “Hello”. I’m a survivor. Check out my bio...diagnosed in 2013 and now it’s 2021!!!!! My life has been forever changed but I am here and doing well. Offering encouragement to all of you to keep fighting, keep going and keep the faith. Every day is a gift.
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yea girlstrong! Thanks for posting.
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Hi ladies,
Now in year 16! dxed in 2005 Stage IIIC, 12 Nodes pos. and lots of other baddies.
healthy and enjoying living large every day!
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LKC, you are a winner, and very encouraging. If you can, I certainly can! Hugs.
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congrats Ikc. Thank you for posting
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lkc - Thanks for posting. It always makes me smile when I read these.
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Hello all -- a question about transitioning to just Herceptin/Perjeta after the Carbo/Taxo is done. I had a horrible chemo experience so far. Never been so persistently sick in my life and wound up in the ER twice. Only made it through 3 cycles of TCHP (and then Abraxane instead of Taxotere which was even worse) together before my doctor pulled the plug on the chemo drugs (at least temporarily). Therefore, I'm just doing the HP, starting on Monday. Question is: Did you have many side effects from just those two? I'm terrified of sitting in that chair again but hoping I'll be able to tolerate the two targeted drugs better than the whole protocol. What was your experience? Many thanks.
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I think Perjeta caused my diarrhea - but since I was only taking it with TCHP, I can't really say. Good luck.
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