Calling all TNs
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Thanks for the positive updates & good to hear from you Paula!!
I’m moving on to Xeloda cycle 3. So far, so good. At this point, I’m trying to keep active and I’m deferring making significant progress on weight & joint issues until off meds. Getting ready to head out of town on a much needed mom’s weekend away with some very good friends.
Sending good thoughts to all of you, wherever you are in this process!
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Greetings to Joy777. Thanks for stopping in. I've been on a break from the boards as well.
Sending gentle hugs to all.
Val
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just stopping in to provide encouragement...Stage 3c at diagnosis and now four years later still doing well...it a long road and side effects like neuropathy stink but you can survive this diagnosis and disease.
God bless ladies
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Yay SCVA!! That is wonderful to hear!
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SCVA, congrats thankful to hear your doing well. Have a wonderful Holiday Season..
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I'm sorry abut the neuropathy, SCVA, but it's very encouraging to know that you're doing well. Thank you for sharing the update.
Lyn
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SCVA yay on 4 years!!! Thank you for posting.
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Thank you, SCVA, from a Stage IIIa still in treatment! Your encouragement means so much!
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had my first 3 moths post treatment survivorship appointment today. Wasn’t really sure what to expect. Overall it went well. Just a recap of my diagnosis and prognosis as well as signs to not ignore etc... it was nice to be there and not feel like crap, I will say that. I thought I was feeling pretty good other than some early afternoon fatigue I often feel. My dr said most people don’t report feeling “normal” until 2-3 years post treatment sometimes. Guess I have a ways to go! Anyway, just checking in. I hope everyone’s is doing ok!
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Thank You to all who come back to post updates... It's so encouraging and comforting!
Cccmc2: Congrats on finishing treatment! I didn't realize it had been three months already. As the year goes on, you'll start feeling more and more like "yourself", and not so much like a "patient". A year pfc I feel pretty close to pre-diagnosis.
Vickki
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Cccmc2, Congrats about 3 months out.. what are the things you should not ignore?
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undrago71,
Without looking at my packet they gave me, what I remember is don’t ignore any type of chest pain or nausea, a constant cough with shortness of breath, and bone pain in a specific spot that won’t get better no matter what you’ve tried. And of course any new breast/chest area lumps and bumps. Most of these things I knew already.
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Also a headache that doesn’t go away even if it’s so slight you might get used to it. I know it might sound obvious, but better safe than sorry.Congrats on 3 months
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TODAY, THREE YEARS AGO...THIS VERY MINUTE I WAS IN SURGERY TO REMOVE A 2.5 MALIGNANT TN TUMOR. I was sure my life was over, that I had received a death sentence.
TODAY IN A FEW HOURS, I'M MEETING A FRIEND FOR AN ANIVERSARY LUNCH‼️
TO ALL OF YOU JUST BEGINING A VERY SCARY JOURNEY....I want to tell you there is hope, there are good days ahead.
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Cathytoo,
HOORAY!!! Congrats!!!
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Way to go, Cathytoo!
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Had DCIS in 2012 (age 42. Left breast. Lumpectomy, radiation, Tamoxifen.
DX Stage 1 triple negative, 8 mm in right breast through routine mammogram in September (age 47). No lump felt, even after we knew it was there.
Double mastectomy with lat flap immediate reconstruction on 10.24.18. Negative nodes. Starting chemo on 11.27.18.
No family history, BRCA negative.
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cccmc2 - so glad to hear you’re feeling well! It can definitely take time - I’m 9 months out from treatment and would say I’m doing very well, but not 100%.
Cathytoo - Congrats on teaching such an important milestone!! I’m so happy you got to celebrate with a friend!
Jennie - were here for you. It’s such a hard diagnosis, especially at the start. Hugs to you.
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WOOHOOO Congrats 3 years and many more, Cathytoo!
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I am new to the forum. Just diagnosed in late Oct 2018. Found the lump myself by watching breast cancer awareness month commercials. Decided to check myself and I found a lump in left breast. I wanted to know from the TN survivors, did you receive chemo before surgery? Did you choose a lumpectomy and later had a reoccurence even being Braca negative? I am leaning toward a mastectomy. Did you need radiationafter a Mastectomy choice? My lump is 2.1cm grade 3, no lymph node action and Im 41 yrs old. No cancer history in my family. Just wanted to know what the choices were as far as lumpectomy vs mastectomy and the reasoning for that choice. Thank you
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I had found mine lump. Mis-diagnosed @ mammogram later found my pain in shoulder was swollen lymphnodes. Had chemo prior to surgery LX since I still needed radiation. This all happened this year..reasoning of chemo before surgery is to try to reduce the size.LX is bcuz skin needed to heal and reduce the amount of possible complications.
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Hope, I chose neoadjuvant AC chemo (chemo before surgery) as my MO said the data with this kind of treatment was more favorable. I also chose a Lumpectomy as to try to preserve the option of breast feeding when we could have kids. I was 28 at the time and this was important to me. My SO also said the data was almost negligible in comps for lumpectomy vs mastectomy. The research I did myself mirrored what they told me so my choice was made. No genes saying I should have cancer. Got clean margins for surgery and the lymph node they removed looked good in surgery. Later pathology showed the node did have some trace TN cells, but SO didn’t want to operate to remove more. I wish she had. I had a local recurrence during radiation late 2017 and didn’t realize it. None of the 3 doctors that checked thought the lumps were cancer so I went on to be NED for 2 months. Early this year I found out I had brain mets after having a headache for 2 weeks. It was so slight I almost cancelled the MRI. I look back and know I did what I thought was right for me. I don’t think any treatment is required. I chose radiation and my MO highly suggested I do it given the nature of TNBC. I also chose to do TC chemo after my surgery at the recommendation of my MO because of the positive node. Then I had radiation. Do what’s right for you, but push for what you feel is right. If you don’t think something is on the up n up get a second opinion. I just followed my MO’s lead like a kid following a parent even when I felt something was wrong (like with the lumps I found during radiation). A women I know who also had BC, but not TN, had a double mastectomy and didn’t do radiation. She also had a recurrence along the scar on the opposite side of the original cancer boob. She told me that is extremely rare though. I’m not sure if it’s the same for TN. She was very happy with her choice and opted for reconstruction. The things they can do with tattoos and making what looks and feels like a real nipple these days is impressive. She did do radiation after the recurrence though. It’s not so bad. Funny enough we ended up in radiation at the same time and got to compare boobs each week and how to help with the se’s. I know it’s overwhelming making all these choices now and praying you don’t f it up somehow. I think you are off to a good start asking questions and researching. Best of wishes to you0
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HopeBry - I received chemo after lumpectomy, but I didn’t know I had TN tumor until pathology came back after surgery - the two that were found on the mammogram were hiding the third, which was the TN tumor.
Once I found that out, I panicked and considered getting a mastectomy. However, after speaking with my cancer team, I am at a highly recommended cancer center, I was 100% fine with my decision. I’m very happy to have my breast, but I completely understand why others make the choice of a mastectomy.
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I have been doing chemo first. A big advantage is watching the tumor to know if it is or isn't responding to the chemo.
I am on Taxotere/Carboplatin. I have had a great response, in terms of shrinking; it appears to be totally gone. But we will know for sure only after surgery is done. I will have lumpectomy + radiation. My surgeon and oncologist both said the long term survival is the same, and I have to have radiation anyhow, due to involved lymph node, so why not the less gnarly surgery?
If I do not appear to have pCR when I get my MRI in another 2 weeks, I will likely switch to a different surgeon, in order to get intra-operative radiation to the tumor bed (radiation is done during the surgery). Hopefully then I will do proton beam radiation for my whole-breast followup.
Good luck to you. Great that it is not in the lymph node!
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Thank you all for the feedback. I have not had my genetic test results yet but want to lesson my chances of reoccurrence. My young daughter lost her dad to colon cancer this year. She does not know yet of my diagnosis. Trying to figure out when to tell her. Shes 9 and still having a hard time. I want to eliminate the cancer ever coming back if possible. Want to be here for my baby. I like to hear other peoples experiences. thanks
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Cathytoo! Congratulations!!! Thanks for coming back and sharing your success! I can't wait to be in your shoes!!
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Thanks for your story
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HopeBry - poor kid. You’re in a delicate situation for sure.
My advice is always to be honest, because kids are so aware of our change in mood etc - they know when something is going on. And to me the worst would be for a child to find out from someone else.
That being said, there is plenty of great advice to be found online. I believe one thing is that you don’t want to scare them. You can share your diagnosis and all you are doing to fight.
My kids were older - 13 and 16 - and it was hard. My older son actually stayed home from school the day after I told him - he was literally in disbelief because I am such an otherwise healthy person. I saved my breakdowns for in the shower.
Sorry I can’t be more help - all kids are different and your DD has already had such heartbreak.
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I don’t have kids, but my grandma (who I was closer with than my mom) passed away from cancer. I found out later that she had had 3 different cancers in her almost 80 years. I knew nothing of the first 2, but she told me about this last time. I was so grateful I got to make the most of my time with her even though we didn’t know what the outcome would be. It also gave me time with her to slowly accept that she could/was being taken from me. Time that I otherwise would have thought I had in the future to ask her questions and plan trips to see her. She didn’t tell me all the details of her diagnosis just the need to knows which I think was her way of protecting me. She did what she felt was best and that’s all any of us can do I think.0
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That is helpful. I will tell her the basics in a way she understands and share the positives of finding it early as opposed to what her dad experienced finding out too late. Thank you!
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