I really wish I didn't know

I am so very sorry you are dealing with this. Everything about this disease is unfair. Words fail me at the moment, but I wanted to post and say that I'm thinking of you

I wonder how effective they thought the TC treatments were. I would definitely get second opinions on treatment. There are many long term stage 3 survivors out there, many on BCO.

Praying for you. I also have er+ pr- and her2- IDC and ILC tumors, gone after surgery.

I completely understand how you feel and why you feel like this now. I was a similar age to you when diagnosed and had (what I think) was quite a poor prognosis.

HER2+++ with a 5cm lump (plus another underneath), widespread DCIS throughout the whole breast, a huge lump in my armpit with lots of lymph node involvement and an aggressive stage 3 invasive ductal carcinoma.

I had chemotherapy first, followed by an operation where they took off the whole breast and literally went down to the bone and only got 7mm of clearance. All my lymph nodes removed. A year of herceptin and a course of radiotherapy.

That was in 2007. Now, in 2016, I'm still here and doing well (NED) and feeling really good. I can't believe I went through that and when I saw your post, I knew I needed to reply to you to help you. I was in the most terrible state (and like you almost wished I didn't know certain things).

I hope this helps you a little - I know that just knowing about others who had been through similar and had come out the other side really helped me. Over time you will start to feel better, but right now, just concentrate on doing whatever makes you feel better - going out for a walk, being with people etc. Surround yourself with positive people and don't let anybody tell you anything negative. Big hugs

Don't carry too many preconceived notions into the various stages of your treatment. This advice was given to me by my oncologist early on and it made me realise we need to reach an intellectual equilibrium that sustains us through each phase of our treatments.

Elise, I'm reaching out to you as well - all I can say is, when I was diagnosed almost 11 years ago with 10 positive nodes, multifocal tumors and skin involvement, it meant a lot to read stories from IIIC survivors who were much further out from diagnosis that I was (and I couldn't find anybody like that locally in my day-to-day life). These boards have helped me so much over the years - and yes, I still struggle daily with my fear of recurrence and have had several scares along the way that took me to a very dark place. HOWEVER - my oncologist refused to give me a timeline and I didn't press for one. I am a strong advocate for Ativan and these days take .5 mg at least once a week for my anxiety issues (which I had LONG before diagnosis).

Don't give up - let time pull you forwards & concentrate on your medical team's instructions to give you a focus. My mantra during the first couple of years was "I will stay well." Find your own if you can...

Hugs - Julie

dear Elise, your post pulled at me too and I wanted to reach out. I so recognise your emotions exactly, I too am 3C after various developments and feel the same. I came here tonight in the fear you express - but your post reminded me of what HAS helped me. I agree about counselling/therapy - that helped me a lot, not to get to either optimism or denial - just to accept that my sense of a secure future had always been imaginary - everyone's is - and that today is really all any of us has. The other thing that helped, oddly, was encountering three stage 4 patients in one week a while back. Suddenly I realised they'd give their right arms for my 'dismal' 30% disease free survival chances. We do have at least SOME chance. That means there can be some hope. If things go badly for us we may look back on these days as the good innocent times. If they go well, we'll realise again they were good and innocent.. Either way, borrowing pain from a future we can't know makes no sense. 'Never imagine yourself in circumstances other than those you are in'. A lovely lady on these boards shared with me that advice, part of a recipe for contentment. Hang in there. So sorry for your suffering x

Yeah, Elise, you are in a dark spot right now, and I would expect that. Pretty normal, for what you are going through. We all seem to go through this scary time, almost a rite of passage for stage three 'ers. I finally smooshed all my path reports in the bottom drawer of my desk and did not exhume them for years. When I did, I discovered my cancer was 8 cm, not the six I had been thinking. and my Ki 67 was through the roof at 70%. When I was diagnosed I had no idea what a Ki 67 meant, so I had to have a delayed freak out many years later when I knew mine was dangerously high.(So you're right, maybe there is a benefit in not knowing.) Just a few months ago, in a moment of clarity--I thought--I threw the whole mess of papers about diagnosis and treatment away! Felt so good.

You have received some good advice here from some of the oldies.. I hope Techtonic Shift will check in with you soon. She has knowledge of clinical trials and additional chemo. She's been proactive at making sure she keeps stage 4 at bay.

Will watch for you...Weesa

elise...hang in there. I am a fellow traveler on the tightrope that is called borderline stage 3/4. I had 10/14 nodes, largest was invading muscle. I had some terrible days where only attivan, ambien and my now 7 year old and husband kept me going. Was diagnosed when my son was 2, then recurrence nightmare last Christmas. It helped (time mostly) to think of the pioneers living on the frontier daily worried about being killed by Indians. Brave men and women who served our country now and in years past on the front lines, how did they function? The persecution of the innocents during WWII who did not have a day, an hour, a minute to do whatever they wanted to do and say to their loved ones. We are far more blessed than many. We walk in a world truly grasping what it means to live day by day though most of us would gladly lay this perspective / gift of "awareness" down. Treatment can be shit. Knowledge is suffocating. It can be hell on earth. BUT....You HAVE on your side treatment options and a battle plan. Get some exercise, rest (even if forced by a pill) and plan a few things....a vacation, a nice get together, a hike in the park with a friend or a dog. You deserve a sense of control and the chance to live in the moment. You may never again get a day to forget about this mess of a shit storm hanging over you - but you will find joy again. You will take a deep breath and even if for a moment, an hour, be content. God's strength and blessings to you and all of us.

unfortunately capsular contracture is my middle name. It's weird, the implant I had (done back the first go around) I never did nipple reconstruction, was going to but now....maybe tattoos in a year or two. Anyhow I didn't think the bilateral implants looked great after a year or two (no rads first time - maybe wouldn't have had to do this crap again!)...but I did rads before chemo this time. Wierd. But surgeon was optimistic it hadn't spread (If I wasn't and some others) so she pushed hard for reverse order (after surgery). So I do have an implant that has tried to climb up my shoulder on the radiated side. Stiff, sore, hurts when I stretch so I don't really. This hasn't effected typing, mowing the lawn, arts and crafts, main thing is reaching up in my cupboards with my left arm and I look like a 13 year old girl on that side since I went with small implants to begin with. I would like to get it "fixed" but not for a year or two if all clear. It's rock hard too. The big thing was I got through rads FINE, stretched, used Aquaphor immediately after each treatment before getting dressed and my skin came back 90 - 95%, never had blistering. I'd do it again if I had to. Especially since I had an ultra sound 2 months ago that showed no remaining tumor or regrowth! Do go to the best or main cancer center for your hospital system. I do believe because my heart was more centrally located they were able to miss radiating completely. My left lung was screwed up pretty bad for about 2 months but the pain when drawing a breath went away (probably the chemo after rads) but I was waterskiing six weeks after last chemo, 3.5 months after last rad!!!!

Hi - you are i the darkest stage right now. It gets easier. I had 8 positive nodes, extracapsular extension and all nodes were matted and something the pathologist said was so dense he couldnt even identify it!

And that was all many moons ago.

I try not to dwell on it though it's just normal to let our minds go there occasionally. Take it a day at a time, or an hour at a time if need be right now.

Live your own best life.

((hugs))

I'm sorry that you are having to face this and I totally get the feeling of wishing you never knew. I felt that way too after my dx, to the point of telling dh that I didn't want anyone to know and I was going to pretend it wasn't happening. It just felt like tooooo much!! But, it will get a little easier each day...I promise.

I think you should get a 2nd opinion though, this might help you as well with feeling overwhelmed. Someone to look at your case and give some extra input is never a bad idea.

You've gotten lot's of good advice and there are alot of great ladies here who have faced similar. Just recently I was looking over my pathology report, I never did back in the beginning. I didn't know that I was actually grade 3 or that I had capsular extension....and yeah it freaked me out. Cancer just sucks, BC is a bitch! I was 39 at dx.

((hugs))

Wow Tectonic, that's a great post – something for everyone and so nicely written. Your sage advice is a real blueprint for treatment, and you've well explained the importance of self-advocacy, thorough research, finding a good medical team, etc and, especially, attaining the mental strength to deal with all the shit that comes your way.

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