I really wish I didn't know

Hey, Tectonic, your posts here are very impressive and display a great generosity of spirit as well as precise and well written information. You are an example of why I am still here after 14 years, --and if I ever slip into stage IV, or even suspect it, you will see a PM from me. Your information is a gift to all of us. Big gratitude and admiration being beamed to you tonight from the chilly mountains of western North Carolina-- Weesa

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Kicks, that was unusual treatment, sandwiching the surgery between two chemos. Very effective though. I had a lump to start with, but it wasn't until the taxol kicked in that it really shrunk to a surgically manageable size. As I've noted here before, men aren't offered reconstruction, so that's one less decision for us. Anyway, thanks for sharing your interesting story and cheering us all up with your positive outlook.

I just want to chime in and offer some good energy and support. I went into surgery thinking I was stage IIB and came out devastated by the pathology report--28 positive lymph nodes, 8 grossly positive and some matted and bursting as well.......I think the worst time of my life was waiting for results from my scans after we found out how extensive it was, which came back clear, thank goodness. I could barely move, eat, sleep, etc for days, I just lay frozen on the couch trying to distract myself with TV and anxiety meds. I thought I would never get over the crippling fear I had. I finished chemo a month ago and start rads in a week or so. I am not sure how I did it, but my fear started slipping away and I started living day by day with appreciation . When I first found out about my path report I got incredible support here. I go to therapy with someone who practices Acceptance Commitment Therapy--it's about how to be able to say, I am scared AND I can still have a good quality of live. I echo the suggestion of a stronger anxiety med, I take klonopin which is strong and once you start it you will have to ween yourself off but it's safe if you only take one or two per day, I don't know what I'd do without it.

People are sharing some amazing info in this thread, I'm going to look into some of it myself! I think a turning point for me has been the combination of seeing so many stage IIIC folks share their stories of survival and speaking to my oncologist about my odds during my last appointment . she is very blunt which I actually appreciate and would just say it if she thought my odds were bad . she didn't deny I am high risk but when I said I have a lot of fear bc I haven't met anyone with as many positive lymph nodes as me she said, oh I have met many, many people who've had as many or more and are doing great. she said I have every reason to think my cancer won't ever come back, as much or more as to think it will. She speaks in numbers and had given me some very positive percentages of survival. After that appointment I made a choice to go with that narrative, rather than the one I had created of doom and gloom. I have rough days where I go down the rabbit hole but they are less and less and I'm learning to deal with them better. It just feels better to enjoy each day instead of worrying about future days----but I definitely know how much work that is and that it's easier said than done.

I hope some of this is helpful. Wish I could give you a hug as someone who knows your fear. I do believe you will start to feel stronger. you are much braver than you know or feel right now!

Ali-me78, as you can see from reading the posts here, many of us who've been through neoadjuvant treatment find we have not had pathologic complete response following surgery. Is radiation part of your treatment plan? I hope you stick around here and do keep us posted on your progress.

Lindzanne, thanks for posting your story. Gotta love your blunt onc, since she has given you both a straight analysis and hope at the same time. Good luck with the rads, they are a bit of a lay down, literally, after the surgery and chemo.

Hi Elise

I truly can empathise. I was intent on being a long term survivor too, but after my pathology results I'm almost paralysed with fear. I'm still in shock i think.

There is some concern around rads and my implant reconstruction, but I knew that before I decided to go ahead with it. My plastic surgeon said I have healthy skin and about a 50/50 chance of making it through rads without it messing up my implant. Mind you, I don't know what difference it might make now that I'll likely be having a longer course of rads 😕

I can't stop worrying about spread to other organs. I'm waiting to speak to my oncologist. I've read some articles about additional chemo for people that didn't have a complete pathological response to Neo adjuvant chemo and I'm going to ask my oncologist about this. I'm also interested in immunology but it's not offered for breast cancer sufferers in Australia yet.

I am going to start seeing a psychologist soon. Are you seeing a therapist at all?

Ali-me78 - if I read your report correctly the Ki 67 in your residual tumour is very low? That's positive - chemo did a good job. Get your onc to talk about that to you. There are ladies here with even scarier path reports and good outcomes. Take heart.

Ali-me78,

I agree with SSinUK; your pathology report is more positive than you think. It says that recent treatment has had a "marked effect." I wouldn't worry about the survival of the DCIS -- since it wasn't invasive, chemo was unlikely to have impact on it. ((Hugs))

hi all me 78, and others on this thread...Forgive me, but I didn't read all the posts. I just wanted to let you know I had 12 out of 14 pos nodes, both axillary and sentinel nodes were completely replaced by tumor., the other nodes all matted and a mess.. I also had lymph, vascular invasion, with a added bonus of her2 positive. Oh yeah, and no clear margins after my last surgery. I had both my breasts removed, and of course being a nurse trained in oncology I was devastated. At thi dx. However, I had lost all my maternal family members to BC and was too stubborn to go that way too. Keep in mind there are many advances in today's setting and as stage III we get the big guns in TX,Which is actually a good thing.

It is now almost 12 yrs later, I am well and happy as a clam. BTW there are many of us stage IIIers out there living oUr lives so beyond this.

My very best to you all!

This is mainly in response to rads and breast reconstruction worries; I had chemo and radiation with Tissue Expanders (filled before the rads). I had some shrinkage due to rads but it just made my breast look a bit perkier than the other side. I had the exchange to implants 6 months after the last rad. 8 months later I am okay. My breasts are finally softening up. I didn't have enough fat to have the fat grafting (I am skinny) but although my breasts are uneven (and the left (radiated) looks fake), they look fine in clothes, and they look okay without clothes as well. In a year I will see if I can lift the good breast a little to even things up, but even if I can't they still look okay. Nothing ugly or deformed looking about them. My husbands only issue is that they are still quite hard, but this is softening every day! I plan to make it to 88 years and die in my sleep.

Hi everyone, wow - it's been a while!

My 2 year diagnosis anniversary is coming up this week.

I finished rads, had my ovaries and uterus removed, and continue to take Exemestane. My bone density has suffered, so I'm on Prolia injections too. But...I am alive, and I am ok

I just wanted to say hi, and thank you for the support you all gave me back in 2016. I hope everyone is doing well?