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Old 10-19-2015, 01:15 PM   #42
Andrea Barnett Budin
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Join Date: Oct 2005
Location: LAND OF YES! w/home in Boca Raton, Florida Orig from L.I., N.Y. Ever hovering IN THE NOW...
Posts: 1,904
Re: Invited to a talk by Dr Slamon.

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...
__________________
Andi BB
'95 post-meno dx Invasive LOBULAR w/9cm tumor! YIKES + 2/21 nodes. Clear mammo 10 mnths earlier. Mastec/tram flap reconst/PORT/8 mnths chemo (4Adria/8CMF). Borderline ER/PR. Tamoxifen 2 yrs. Felt BLESSED. I could walk and talk, feed and bathe myself! I KNEW I would survive...

'98 -- multiple mets to liver. HER2+ 80%. ER/PR- Raging, highly aggressive tumors spreading fast. New PORT. 9 mnths Taxotere Fought fire w/fire! Pronounced in cautious remission 5/99. Taxotere weekly for 6 wks, 2 wks off -- for 9 mnths. TALK ABOUT GRUELING! (I believe they've altered that protocol since those days -- sure hope so!!)
+ good old Vit H wkly for 1st 3 yrs, then triple dosage ev 3 wks for 7 yrs more... The "easy" chemo, right?! Not a walk in the park, but not a freight train coming at 'ya either...

Added Herceptin Nov '98 (6 wks after FDA fast-tracked it for met bc). Stayed w/Vit H till July '08! Now I AM FREE! Humbly and eternally grateful for this life-saving drug! NED since '99 and planning on keeping it that way. To hell w/poor prognosis and nasty stats! STOPPED VIT H JULY '08...! REMAIN STABLE... Eternally grateful...Yes is a world & in this world of yes live (skillfully curled) all worlds ... (e e cummings) EVERY DAY I BEAT MY PREVIOUS RECORD FOR # OF CONSECUTIVE DAYS I'VE STAYED ALIVE. Smile KNOWING you too can be a miracle. Up to me and God now...
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