Calling all TNs
Comments
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Lookingforward, I agree with Arlene,Bluedog and Cathy, wow, that photo and you are beautiful!
Al, so very happy for you and the sweet lady love.
Twaz, yes, I was so tired before my diagnosis and early in treatment. I quess my body was trying to tell me something. Hugs to you.
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Congrats for 3 years ALhusband ...wishing many more happy and healthy years for her!! 3 years is the first milestone..right!
Lookingforw.... Happy for clear scans!! It is after all " only" arthritis!! Piece of cake as compared to tnbc!!
Funny thing ,,not sure how many have faced this....The amount of hair which has come up after chemo is 1/2 the amount of hair which I had before. Surely chemo has permanently destroyed 50 percent of my hair follicles. ...from dense hair to extremely sparse hair!
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BanR, do you take biotin, or have you tried anything like rogaine
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Looking forward gorgeous photo! That's amazing about the head stands.
Alhusband congrats to you and your wife on the 3 year milestone.
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Congrats on the three years!! Fantastic to read stories like those. Keep posting them in.. it's giving us hope and strengh..
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hi Cathytoo, I was just at my MO yesterday for facial flushing. I looked like I had wicked sunburn. It was Also on my chest and slight flushing on my arms. He said it is a reaction from steroids. He said it would go away in 2-3 days and I could take benedryl if I wished but he wouldn't think I should unless it was itchy or burning. But it was up to me.
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Phaila...it's funny the different opinions given out. When I got that on my face my MO prescribed a steroid med pack. Just as I was about to start it, the flushing and burning went away. I only had it that one time. It was very painful.
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Same here, I had flushing then after a couple of days and some benydryl it went away. My MO immediately said it was the steroids when she saw it. I knew that as well, from a previous experience with steroids.
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Alhusband- so happy for you & your wife. Three years. Woooohooooo.
My hair is at least 50% thinner than it was. I take Biotin as well. I'm not sure there is anything that can be done. Just part of the changes.
Have a blessed weekend everyone.
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I hope everyone is having a good weekend. Friday & yesterday, I felt like myself. Almost forgot about the cancer. Today, ugh. Super tired, sore throat, headache. My daughter has softball today. Hoping to make a game.
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My MIL arrives tomorrow for a few days. I'm halfway through chemo, done with AC. I've been cleaning all morning, but have to stop and rest between tasks. I haven't been doing much cleaning since January. I let my husband take the dog for a hike today instead of going with them. I still have more laundry to do and need to mop the wood and cork floors. Taxol starts next Thursday and I'm NOT looking forward to it.
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Hi everyone! I'm 41, diagnosed 11/19/15, IDC, left, 2.5 cm, grade 3, stage IIb, ki67 90%, BRCA neg, but with a family history on father's side, I won't know about node involvement until after surgery, but I had a biopsy of one node and it was clear. AC + T, I'm done with AC and am on #6 of 12 Taxol. Surgery will come in June or July. At this point, I haven't decided on a bi- mx or lx with rads. My gut tells me to do the mx, but my surgeon and oncologist seemed surprised when I said that's the way I was leaning..."why remove healthy breast, etc" I want to do everything now to reduce the risk of having to deal with this again in the future! I'm done having children and crave the peace of mind not having mammos/biopsies/MRI every six months and constantly worrying about a recurrence or new cancer forming.
For those of you with similar stats, what were your main reasons for selecting the surgical option you did? Thanks!
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Lawyer 180, I wanted the least amount of surgery, so I had a lumpectomy. But, my ki67 was only 20%. I was contemplating a reduction on the non-cancer side, but right now I'm thinking I won't even do that.
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Hi Lawyer
My ki67 was 89%, my tumor was large at almost 5 cm. I chose bmx because like you I didn't want the scans and tests all the time. I am a busy mom and have to take my children with me to the Dr. all the time since I homeschool. I would tell you to be prepared if you do reconstruction that when it goes well it's wonderful and when there are issues it takes awhile to address them but in the end it all comes together. Just do your research and in the end you must trust that you will make the right choice. My thoughts and prayers are with you. Please let us know if you need anything. We are here for you.
Hugs
G
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Lawyer, Welcome! I didn't have a choice on surgery, so I cannot help to answer your question, except to offer encouragement. I know you will get more responses soon. My best to you and again, glad you found us.
Viszla I am glad your mil is coming, if she is like mine, what a blessing. I get how you are doing extra cleaning.....ugh. we are having company this weekend...an old college friend who visited once after 30 years, while he was a bachelor. This was last year. He has remarried, and I guess we showed him such a great time that he wants to bring his new wife to meet us. I am happy to have them here, but him as a bachelor was different! Lots of spring cleaning going on!
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Lawyer180,
Triple negatives underage 45 are among the only ones for whom there is an increased risk of contraleral breast cancer/other side. As you probably know, another instance is braca+. I had bilateral mastectomy w/ radiation on the right side.
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Hello to all of the new ladies that have found the TN thread. And congrats to those passing those milestones big and small.
Lawyer, my breast surgeon gave me options when she gave me my dx of BC. At the time I knew nothing of TN or stage or grade. I also did not know if I was BRCA + or if I had any positive nodes.
It took me 24 hours to think about what type of surgery I wanted. I chose BMX. BUT it is not the right choice for everyone. And statistics say that survival rates are the same vs lumpectomy or UMX. So do what feels right for you and only YOU. My husband was supportive of whatever I decided to do and so was my surgeon. My reconstruction went well and I am happy with the results. I knew that my new breasts would be numb...sad but true. And I do have(still) some armpit pain on the side that the nodes were removed.
Also my Ki-67 =45% and p53 =53%. I am almost 7 years from diagnosis and remain cancer free.
Wishing everyone going through treatment minimal side effects and many good people supporting and helping you to get what you need.
Love to you all.
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Lawyer180, good timing for your question, I actually meet with my surgeon tomorrow to go over my options. I'm 45, 4.5x4cm tumor that has thankfully shrunk to the point that I can't feel it anymore half way through chemo. I also have one node positive that we know of.
The first surgeon I met with said BMX, the second, who I'm seeing again tomorrow said LX as long as we could get the tumor to shrink. I'm leaning toward the lumpectomy, everything I've read says with radiation it's the same as having a mastectomy. I'll be having radiation no matter what due to the node. BMX does not guarantee no recurrence, etc. Honestly, I don't want to deal with major surgery and reconstruction, I'm a single mom who has to get her butt back to work. But like everyone else said, everyone has their reasons for the choices they make. I'll be interested to see what my surgeon has to say. Best wishes to you
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Ki67 ???? I'm feeling somewhat out of touch here. What is this exactly and when is testing done? I had a lumpectomy, sentinel node resection and 4 TC infusions. NO ONE HAS YET TO MENTION THIS TESTING TO ME!!!
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Cath
Ki67 is the rate of cell growth, the % of cells dividing. Yoursmay be in your path report. TNBC often has a high Ki67, mine was 90%. My MO said rapidly dividing cells respond better to chemo, so I try to look at a high Ki67 as maybe a good thing? (Ugh). She also said it can be unreliable, and not all docs agree upon the use of the results, so it is possible yours was not tested?Anyway, you can read about it on BCO, just search Rate of Cell Growth---and try to not worry bout it. (I put my path report in my attic, so I would stop reading it!)
Hugs! Arlene
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Greenae......good idea, Arlene, to put the damn path report in the attic‼️ I haven't read mine in a while, but I don't think the K167 was mentioned. I would imagine mine would be high also. I like that maybe Chemo works better on faster dividing cells. My tumor was a mix of invasive and non-invasive cells. The slides had to be sent to three labs until it was finally determined to treat the tumor as invasive. I was TN from the core biopsy, so I never understood why it would be s good thing if the tumor was DCIS. I would still need the same treatment because of the TN. But, my surgeon was only interested in invasive vs non. Anyway we can think ourselves crazy. Better not to think at all. Thanks for your explanation
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Cath,
Check out our "signatures" below. Diagnoses almost the same. Believe me, i Get it!
I hated knowing my Ki67 was so high... But I am "over" it... And just thinking the TC KILLED 'Em ALL0 -
Lawyer, I had triple positive bc five and a half years ago, and wanted a bmx then, but my bs wouldn't do it. He said it wasn't necessary to remove a healthy breast. Now I'm fighting bc again, this time triple negative, and I was so, so angry at dx. All I could think of was that I wouldn't be in this position if I'd had both off when I wanted it.
I realise that this bc is completely different to what I had over five years ago, but I would get very anxious at every mammo and u/s wondering if it had come back in the other breast. If I had my time over again I would have insisted on the bmx, or found a surgeon who would listen to me.
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hi lawyer, I was 44 at dx last May under 1cm mass with a ki67 of 35, node negative. I have family history of bc; mom and grandmom who were not tn. I tested negative for brca. I chose lumpectomy and rads since my cancer was small and I had 40 DD breasts. It was hard to come to that decision as I had to make the choice twice when I needed a reexcision after my initial surgery. Right after I regretted not having a bmx when I found out I needed a reexcision and again after I saw the cosmetic appearance of my breast after reexcision. Now months later after treatment I was glad I had rads. I feel with tn the extra treatment of rads was helpful. My breasts will eventually need a reduction and lift due to my recent 40 lb weight loss since chemo ended in December. I have made peace with my decision of lumpectomy and hope that I will not have a reoccurrence. Hope this helps.
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Welcome Lawyer. I'm the new girl around here- dx'ed a week ago. I appreciate this conversation because it gives perspective on what I face a few months down the road.
I FINALLY met with a doctor today. I was only diagnosed a week ago, but it was the longest week ever. Unfortunately the waiting isn't over, but I finally feel like I have some answers to what I'm facing.
According to the ultrasound, the tumor is 1.2 cm. I am working with a teaching hospital and had two doctors and a student looking for the lump today. All three had trouble finding it and said I was really lucky that I found it! Like most of you, chemo will be before surgery. The surgery is where things are up in the air. I had a boob job 15 years ago and time plus two babies = jacked up boobs. One implant sags, the other one, where the cancer is, the implant has migrated to the top of my chest. Honestly, I had no clue how off they were! Put on a bra and a shirt and they look fine, so I never worried about it. My surgeon thinks I'll be a good candidate for a lumpectomy, but because of the implant issue, we can probably work a reconstruction in as well. BUT, all this depends ultimately on more test results and how I come out on the genetics test. I meet with a plastic surgeon on the 20th.
MRI is next Wednesday. Another week of waiting. Ugh. I don't have an oncologist on my case yet, but the surgeon is trying to pull some strings. She thinks I can start chemo as soon as 2-3 weeks from now.
One more thing that a survivor I met with brought up-- nipple reconstruction. She honestly wishes she wouldn't have bothered. She has me thinking on that one. What are your thoughts?
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I did the 3D nipple tattoo and i really like the way it came out!
Edited to add - mine were done in MD at Vinnies shop but by Trent. Once they were done I looked at myself more positive and it made my mounds of fat look like boobs!
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I love my nipple tattos done by Vinnie Myers. (You'll hear a lot about him). My plastic surgeon recommended against nipple reconstruction because there can be issues w blood supply/complications. Perhaps others have had a good experience; don't know
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I also did 3D nipple tattoos. I waited over a year after my exchange surgery. I chose a cosmetic tattoo artist about 90 miles from my home. 3 sessions about 90 minutes each. No pain at all. I am happy with the results and makes looking in the mirror at my scarred up chest so much easier.
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Hi all, interesting topic thanks lawyer - it was also my instinct to have everything removed, and I was surprised to hear that outcomes for recurrence are the same for LX vs MX. From what I have understood, even if all breast tissue is removed, recurrence occurs at the same rate, but as it can't recur in the breast it recurs in another place like skin, chest wall or lung. When I heard this it did change my view, but it was only anecdotal, I haven't read any papers on the subject. Another thing to consider it what you will look like afterwards. In early days I thought I wouldn't care how I looked, but there are some excellent photos on this site and also there is a other site which think is called breast free which discusses these issues and makes it more real. I haven't made my decision yet.
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ScotBird, it's very interesting what you're saying about LX vs MX. Do you know where I can find more information about the subject? Friday is the CT scan and MRI and next week I'll hear if I have an option. In my case BMX would be the only logical option and according to the radiologist it's going to be almost impossible to reconstruct.
I'm mostly lurking here.I just finished chemo and wait for the tests to see if the chemo worked.
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