Invited to a talk by Dr Slamon.

[Juls]

Good idea - forget the stats- just wish my Onc. would do this!

Looked for article on Dr Slamon's visit to Ireland. Only one small article in Irish News newspaper. Had hoped there would be more coverage.

[Andrea Barnett Budin]

I learned from the getgo -- nurses and docs have a way of looking at you (no malice intended I understand) as a walking dead person.

I had a 9 cm tumor in my breast. I went to my radiologist, bumping my mammo up cause I found a general hardness in my left breast that started to freak me out. Not a pea or a marble. The size of my hand. Must be a cyst. I'll have to have surgery to remove it I told myself in my saner moments.

The nurse checked me out, as is customary in that office. Then the mammo. Then wait. In your robe. Then they called me for addl pics. I am dense so this is my norm. Then back into the nurses office. The radiologist came rushing in, looking harried and distressed. She did an ultrasound. Around and around and around. Then she did it all again. Gosh, she must really be busy I thought, noting her demeanor.

Get dressed. Meet me in my office.

Well, that was abrupt. As I walked down the hall the nurses came from everywhere and backed away from me, their backs against the wall. The air was thick with a weird energy. They all knew!! That's the lady with the big tumor in her breast.

The way docs and nurses look at you says so much and it is so scary. We sense it on a cellular level. They need to stop doing that! Still all these yrs later, when they find something "new" (in my belly these days) they look seriously concerned. They have seen it all. And so much of it is so awful.

I have to clear their energy out of my way. I sit calmly and smile. I lock eyes with my wonderful onc who is clearly disturbed and wants a biopsy which means surgery cause the new thing is deep inside, and I say assuredly, I do not have cancer. He just doesn't know what to do with that. I am certain. He needs a biopsy to see if his worst suspicions are true.

I did the surgery (abdom) in 2013. Benign. All that fuss. And I felt great physically going in and like crap leaving. I don't do anesthesia well. And I learned that every move we make doesn't just involve the spine -- it also involves the abdomen. So getting up from a sitting position, from a lying down position means -- prepare yourself, you're going to feel a blinding stabbing pain. The surgery inflamed my chemo-induced IBS (which is my constant companion since 1995) and my semi awful condition went to major problems, for months and months.

I told my onc -- I am never doing that again, just so you know. He left me alone in 2014 (at my annual CT scans (chest/abd/pelv). In 2015 the radiologist report came back stating, the mass is growing. What mass??? No one mentioned a mass. The thing they saw in 2013 was benign. Geez. Surgery, need to biopsy. NO. I am not doing surgery again.

I do not have cancer. They stare at me. I saw 2 surgeons. The 2nd, head of oncological surgery with an excellent rep suggested surgery. I refused. He looked away not knowing what to do with this woman who insists she does not have cancer. I said, I would do a needle guided CT scan biopsy. He went out to talk to the radiologist. He returned and said, though it is very deep, he says he can do it. And so they did, many wks later cause of hospital screw ups and office staff mess ups. I just kept on my case. Calling, every nicely, asking questions, urging, making my appeal for sanity and efficiency.

Bottom line -- benign.

When I called 5 times for 5 days after for results I finally got through. There was silence when the nice doc got on. He knew why I was calling. What's going on??? So I asked, I would like to know my results. It's benign. Great. Why do you sound so solemn??? Well, whenever we hear benign we always think it could be a false reading. Really? Well, how certain are you that it is benign??? Long pause -- slowly 95%. I'LL TAKE IT. I want to hug you. I got him to laugh.

Nothing is 100% I explained to him. We chatted a bit. My octreotide scan (2 hrs of scanning one day and then another 2 hrs the next day) after a special injection -- was all clear. I said, thoughtfully, I think I love you. I got another laugh. And some more conversation.

But -- I do think you should re-scan in Dec. Fine. Then, he said, if that's good, we'll leave you alone. Hmmm... I am scheduled.

I was demoted. My graduation to annual scans (17 yrs in the making) is now back to every 6 mnths. (But at one time I was every 8 wks for a yr, then ev 3 mnths, then I begged for ev 4 mnths and finally got to ev 6 mnths. When I got to annual scans, I partied.

But the doc's looks, and the nurses, their worry is palpable and disturbing and I've tried explaining this to no avail.

They get all focused on the stats. I refuse. I am a human being. Not a statistic. And I'm sticking with that. Just saying... My best advice to all y'all...

[Becky]

Oh Andi! Your mammo story is so much like mine but nobody would tell me anything. I even begged the technologist who took the mammo to tell me something but she said she couldn't. Off to ultrasound. And you know. The way they look at you. Like you're catchy. I got dressed and the mammo technologist was there. She looked at me hard and said God bless you Rebecca. So she was kind after all as that answered my question.

When I got home my husband asked what happened and I said I have cancer. He said, they just told you outright. I said, oh no, the doctor will call but the technologist said God bless you and that's never happened to me after a mammogram before (or since)

[tricia keegan]

Juls, I had a search myself and found very little too.

Andi, I think you have it right and do think most Dr's focus on the stats too much, my GP is very solemn and always looks at me like I've one foot in the grave lol.

[Andrea Barnett Budin]

Becky, At least that kind tech gave you a good inkling. Though I am sorry you didn't have a doc/radiologist to talk to right then and there.

That I did. She was breathing heavy. Her chest heaving. She walked her chair from the screen holding my xrays and at her desk she locked eyes with me. With her hands clasped she absentmindedly moved the papers in front of her to the side. "You need a breast surgeon". I assumed the thing I thought was a cyst and suspected would require surgery was the reason. Still, the looks of all those nurses in the hallway and her behavior was telling me otherwise.

I said, Is it a cyst? She said, NO! Pause. She took a deep breath
and said, What you have is -- a solid mass! I couldn't think what that meant. She didn't say it was a tumor. Was a solid mass a tumor? I couldn't speak.

Turns out she offered to call a breast surgeon for me. Same name as the one I'd gathered in advance from friends. It was 5 o'clock on the Friday of 4th of July weekend. I nodded yes to her question. She dialed the number. She turned to me and said, The office is closed. It won't be opened till Tuesday...

I could not think. She said, I have his home phone number. Pause. I can call it for you. I nodded. Still unable to speak. I heard her describe the situation and my heart was pounding. It sounded dire. She turned to me and said, He said he can meet you at his office tomorrow, Saturday, at 10 o'clock. Is that good? I nodded.

I went home not KNOWING but....

[Andrea Barnett Budin]

I had called my GYN b/c I had found something that was very concerning to me. I explained it all to his assistant. This was wks before. She said the doc could not see me till 2 wks later.

I called back and emphasized that it was kind of an emergency. There was nothing she could do about.

I called back again and said, Maybe I should have a mammogram so he will have more information to go on. That's a good idea she said. Geez.

When I saw the GYN, after the mammo and after the Saturday morning the breast surgeon opened his darkened office just for me, where he told me after examination and looking at the mammo xrays the radiologist had given me, in his personal office, he told me and my husband that it appeared that I had breast cancer. That was the first time that word cancer had been used.

He was going to do a surgical biopsy but that would not be for about 10 days as he was all booked up. He was very kind, caring, well-informed, professional and pretty wonderful. My husband asked, Well, how certain are you? He paused, leaned forward in his chair and said slowly, shrugging his shoulders -- 99 . 9 % certain.

So when I got to the GYN (who had seen me in Nov but hadn't checked my breasts cause I was having a peri menopausal issue with heavy bleeding and vastly irregular periods. Nothing for 3 mnths and then bleeding for 3 wks. Weird.) the GYN began to pace in the overly large exam room hearing my story. He was out of breath from all his pacing. How did this happen?! I just saw you. He was checking his notes on the large counter. The nurse was handing him pieces of paper.

When he left the room, as I was dressing, the nurse turned from the counter and papers and ran to me. She was a large woman. She threw her arms around me, kind of sobbing, and said -- I will say a prayer for you.

That's when you know for sure that you're in really big trouble.

[sarah]

Yes, we are all here thanks to him. If you haven't seen the tv movie "proof of life" (I think that's the title), do so because it shows how his perseverance helped when gentech and ucla stopped helping his work, he kept on with the help of the Tartikovs (spelling?). now of course, Genetech loves herceptin! but he really had to fight for it. thank you Dr. Slamon. and the FDA wanted him to prove it helped all breast cancers!
Thank goodness for a dedicated and stubborn scientist with a brilliant vision. We are here, enjoying life thanks to him. I hope now he will always find funding easily for anything he wants to do. He deserves that. and to be rich!