Seeking for some encouragement and advise/info

Greetings, sisters.

I hope you all had a nice Christmas time, and may the New Year find you in good health and spirits.

I have like a couple of weeks left before starting the journey to my bilateral mastectomy with tissue expanders. I was diagnosed 1st of November, after I got a bilateral lumpectomy (three lumpectomies actually, two on my left breast and one on my right), with no SNLB unfortunately. Wish my first surgeon had done that during the lumpectomy surgery, but he did not. Anyway, during those 3 past months, my whole life turned upside down, but I guess you all know the feeling too well.

Some background story: I'm a 41 year young Greek gal, newly and happily wed. My marriage was on 16th of April, and it was one of the happiest days of my life. Both me and my DH were anxious to start trying for a family, since time was somehow against me. I knew I had a uterus fibroid which I was monitoring for years, and lately it got bigger, so the route was find a good surgeon to perform a laparoscopic surgery to remove it, then wait about 6 months and then try for a baby. Little did I know about what the future had in store for me. While waiting for the gyn surgeon to find an opening on his busy schedule for my operation, I found a lump on my right breast. Was not that worried at first. I had all my screening tests done (ultra sound, mammogram, magnified mammogram to check more a finding on my right breast and finally a breast MRI), just one year ago, and everything was ok. I knew I had dense breasts, I knew I had some fibroadenomas, but nothing to worry. I called a good friend who works as an ultrasound technician in a hospital and made an appointment. Either way it was time for my routine screening. She was pretty confident that it would be nothing serious, maybe a cyst or something. We run the tests. Ultrasound, then mammogram, then a CESM mammogram all on the same day. My friend and her team was kind of worried about the lump so we scheduled an appointment with a breast surgeon that very same evening. Everybody proposed to remove the suspicious tumor so we scheduled the lumpectomy. The surgeon proposed to operate on my other breast too, cause although he was pretty sure the other findings were benign (fibroadenomas), he preferred to do it as a precaution. I said yes.

And then, a few days later, the biopsy results took us all by surprise. I had cancer in both my breasts. Primary synchronous bilateral cancer, a rare clinical entity as the studies name it.The reported incidence ranges between 0.3% and 12%. Both were Grade 1 (don't know the stage yet, or how to find it.. does it have to to with the lymphs involved?), IDC with DCIS around the tumors. Both are ES and PR positive, HER2 negative, one had no clear margins and the other had really small margins (1mm). The ki-67 showed the cancer type was not aggressive and it was slow growing.

At first, my surgeon proposed to go for re-excision to try to get clear margins, and then I should start radio plus tamoxifene. But later on, he changed his mind and proposed a bilateral mastectomy.

I totally freaked out. In less than 20 days, and while i was still sore and in pain from the 3 lumpectomies, they were asking me to decide on a mastectomy. I did not have enough time to realize I had cancer! I was so angry and frustrated and I just wanted to scream. Hold your horses, guys! Some respect please! It's a woman's breast you are talking about, not some wooden chair. And it's her wish and ability to have a baby one day. How would you expect a woman to make up her mind in a week's time? Especially about the fertility issue, I still can't get over how insensitive my surgeon was. Well, scratch that. I was being too polite. How chauvinist he was. He gave a small lecture on "how women today want to have it all, to finish their studies, and chase their careers, and travel around the world, and live their life and have several sexual partners, and then as they reach towards 40 they remember they want a family and then it's too late as cancer is knocking at their door". He even went on telling me that even if I did not have cancer, I would probably not be able to have a "normal" child cause of my age. Dear God, he did use the word "normal"... He went on saying I could adopt and he does not get why people insist so much in having their own baby.

Please, don't get me wrong, I have nothing against adopting, actually I wish I could adopt, but the law here is very strict and our financial situation won't ever allow me to adopt a child...

I just could not work with this doc. I disliked him, I did not trust him enough, I was not comfortable around him. So I searched for second and third opinions. Saw 2 other breast surgeons, talked with one more over the phone and sent my biopsy papers to a lady friend doc in England. Everybody agreed on the bilateral mastectomy, mainly due to the DCIS present on both my breasts. Why risk it? was the conclusion on their trail of thoughts.

The last doc I saw was a plastic surgeon. He proposed reconstruction with tissue expanders and he promised he will find me a surgeon on his hospital to to perform the mastectomy. We somehow agreed I would contact him again after the New Year.

So here I am.

If I'm ready? I certainly am not. Plain and simple, I don't want to do it. It does not have to do with vanity and I never really thought I was so attached to my breasts, till the time I had to face the possibility of losing them. They are not perfect, they are rather small and a little saggy, but they are mine. They 've been with me all my life, they marked my entering to puberty and womanhood, they made me feel sexy, they gave me pleasure and I hoped they would nurse my baby. And they are mine. I hate to lose them. I hate my husband will lose them too. And all that for the possibility my DCIS might wake up one day. And don't get me wrong, I do admire all the women that took this decision while they had DCIS or the BRCA test positive. I wish I had a fraction of their strength and courage. I might be just a coward, don't know who I am anymore.

My dear husband supports me all the way. He says again and again that he'll stick around no matter what, that we'll pass everything together, that he's gonna love me and want me with or without boobs, that he did not marry me for my boobs, or at least not just for them, and I adore him for this and he's been my rock and strength, but the truth is I'm scared and frightened of everything. The surgery, the pain after, the pain during the expander's fillings, the outcome of the reconstruction, the chance (no matter how small) of reccurance.

What most freaks me out though is the thought of losing all sense and feeling on them. How do you cope with this? How is it truly?

Will it feel like... i don't know... dead?

Will I brush people as I pass by and not even knowing? Is there a chance my blouse strap will slip and I'll be boob-flashing without realizing it? Will i be able to feel the sun's warmth on them? Will i be able to feel the water on the sea? Will they always feel like two cold stones in my chest? If I hug someone what would I feel? Is it as scary as it seems in my mind?

Girls, sorry for all the rant... and sorry if all that seems somehow vain, believe me it's not. I 've read everything I could, saw many youtube videos, read the studies, talked a couple of times with breast cancer survivors and used the phone support line we have here, read real life stories of many courageous and marvelous ladies that have been in my shoes, and I am grateful I have a chance to fight this ugly thing, I know I 'm more than lucky to caught it early, I know many women would be happy to be on my stage and prognosis, but at the end of the day, it hurts. I hurt.

Most of the time I 'm doing all right. There are times my thinking is clear and I find the strength I need and I can breath deep and calm, and I'm feeling loved and all. But during the nights things don't go so smoothly. I feel scared and have small panic attacks and end up crying and feeling sorry for myself which I hate.

It's not fair. Not fair at all.