A Wait Off My Chest...

The BRCA tests arrived after only two vs three weeks. What a relief to finally hear back and results were fortunately nega-tiv-oooo. Although one still has to do proper screening, the odds are no longer 60+% more that Ovar/BC will come within the next ten years. This just means getting tested as told and living a very healthy lifestyle. I think I can handle that. Had the results been otherwise, I would've have prophylactically removed some good parts. It must be difficult for women to do that and I was somewhat prepared to, but was more concerned for the side affects. Well, at least for now, I don't have to think about it.

Next steps:

Dear Dr. Osborne:

I spoke with Karen O. and the BRCA results came in early--as suspected, they are negative. I will send Karen a letter stating that it's ok to release the results to you.

That being said, you'll have my core biop slides from MSKCC by Monday or Tuesday and I'm waiting for the authorization # for the MRI . Perhaps we can move the surgery date up from the 19th? I prefer to have it sooner rather than later.

I decided to go with Lumpectomy vs the Mastectomy despite any possible chance of disfigurement. It hit me shortly after I learned about the test results. And when I was mulling it over in my mind, I was walking along W. 57th St., looked up and there was a building canopy on which it said: The Osborne. Talk about a sign.

Please let me know about the date. I am very flexible.

Have a wonderful holiday weekend,

Elizabeth

Beauty Is Only Skin Deep

I'm still slightly tortured over my last visit with Dr. Osborne. Not b/c he did anything wrong. But before I met him, I was determined to do a mastectomy b/c based on what informal research I did, I thought the treated area would be somewhat deformed after doing lumpectomy/radiation. He tells me that I should heal fine from the radiation and to really consider conserving the breast; the results of radiation will be a lot less visible than that of recon surgery. I told him I've heard and read horror stories (relatively speaking) about radiation. He tells me the conditions I explain are rare . I am nervous due to the extreme sensitivity of my skin. I burn and scar easily, get heat rash, blister in the sun (a la Violent Femmes) and my reaction to certain foods, chemicals, extreme temperatures all get manifested in my skin. I've called to make appts w/both a reconstructive surgeon and radiologist just to get their opinions and assure myself that I've done my due diligence. Clearly there are so many things things that cannot be predicted, but I'd like to know that I've thoroughly investigated all of my options. I feel that I'm in the best of hands, but I hope--as most women do-- that there are no ugly scars to remind me of this time in life. Of course health comes first, but based on the assumption that I will be just fine (which I know I will), I can't help but hear the immortal words of Fernando, "Dahling, you look mahvelous..."

My Cup Runneth Over

Today I met with yet another remarkable doctor! I came to Dr. Michael Osborne at the recommendation of Dr. Montgomery at MSKCC. The thought was to investigate a surgeon who'd be covered by my insurance plan (for which I am so grateful to have). The care I received is of utmost importance, and if I can get reimbursed for excellent care, why not pursue it? After googling, networking and finally meeting Dr. Osborne, who by the way has been at Beth Israel on Union Sq. East for only six weeks, I'm here to say that he is one of the finest dr's I've ever met. Seasoned, intelligent, fabulous bedside manner, humble, giving of his time... I've scheduled a tentative surgery date of 9/19.

I am still in need of one more MRI and am awaiting the BRCA results. The latter should arrive w/in another two weeks maximum. The waiting is difficult however I know I will get answers. I take each day as it comes and have time to do that much more research. As one question's answered, another one comes up. Knowledge really is power.

While on my way in to the dr's office today, I crossed paths with a dear friend of mine (nameless) who'd been seeing Dr. O for years. She continues to get a clean bill of health but does annual follow ups despite being told there's no longer a need to. It was meant to be that I saw her b/c she really put my mind at ease that this is a great dr. and that everything will be OK. I've never doubted the latter, but this was coming from someone I know personally experienced this at my age.

I was pretty set on having a mastectomy b/c I'd heard various things about the outcome of radiation. Dr. O seems to think I will look fine afterwards so I am scheduled for a lumpectomy. If the BRCA results come back poz, things will change bu the seems to think the odds are in my favor. The next day or so will be devoted to researching more about the after affects of radiation, but after speaking to my friend last nite, I feel a bit more comfortable with the outcome. This is one of the hardest decisions to make b/c once you do it, there's no turning back.

Of course my health comes first, but there is also an aesthetic/cosmetic component to this for me as with many other women. I want to heal and feel the best that I can.

My Cup is Half Full!

Today's newsflash...this just in....

Results from the core biopsy:

The right side is what was thought. The cancer there is invasive ductal or if you want the technical term:

"Infiltrating ductal carcinoma, moderately differentiated".

Ductal means it's in the ducts of the breast, or where the milk goes vs. lobular
which is where the milk is made (in the glands).

Invasive means it isn't just confined to the very spot it started. That would be in "in situ". In this case it is invasive so it spread out a bit, but don't confuse that w/spreading to another body part; that is
when it metasticizes (sp?).

So we know for sure the right side is getting operated on.

On the left, remember the MRI picked up 2 masses but Dr. Kolb only found one w/use of US (Ultrasound). He did the core biop on the one he found and it is benign!

In technical terms:
"Predominantly firbrotic breast tissue with focal confluent sclerosing adenosis."

Say that ten times fast.

That is excellent news.

Dr. Kolb has to chat w/Dr. Montgomery and figure out how to find the "missing mass." It probably will be nothing but we still must find what the MRI was picking up. She probably will request that I do a more specific MRI. They have them where you do the MRI and there's a grid on you and they literally can biop right there. I've yet to make contact w/her and will of course let you know the next step for that.

What these tests don't tell you is about hormone receptor neg or poz... they need more tissue and it will be tested once they remove the tumor. (Or as Ward calls it, the Good Tumor Man). It also cannot tell you if anything has gone into the lymphnodes. Again, we'll know after surgery and when we get back the pathology report. At that time we will know
which chemo drugs I'll get as well as the need for hormone therapy. And last, we still need the results of the BRCA test.

I just heard from the person who referred me to Dr. Montgomery and he said I am in the best of hands. That the entire team is top notch and the outcomes now are getting better and better. He also assured me that the reconstructive surgeon w whom I'll consult on 9/4 is fantastic, so much so, that he even sent his own wife to him (despite a not so great bedside manner). I think this speaks volumes seeing as he was a chief surgical oncologist at MSK up until just a few years ago.

So, let's just remain thankful that this was caught sooner rather than later and that according to my posse I suppposedly have decent enough cheekbones to sport a super short haircut. (What are friends for?).

Love to one and all,

Elizabreast

Hit Me With Your Chest Shot

The effects of the core biopsy have left my boobs swollen, tender and beautiful shades of black n blue. I feel like they have taken on a life of their own. They are no longer mine. They're there for others to look at, poke n prod, and later discuss with others. But it's ok. They're still mine and every doctor thus far has been caring and I do not leave their offices feeling down. When I get a glimpse at the multi-plum-colored melons, I remember that I'm lucky to be getting treated and this will all be a thing of the past.

D-Cause I Said So!

Friends + Fam,

My neighbor and friend, Karen Marwin, is doing the BC Walk this October. Turns out this was the first year I sponsored someone for it. Who would've thought a few months later she'd be wearing my name on her shirt?!

I'm forwarding information on how to sponsor her.

Many of you asked what you can do to help me. I thank each and every one of you for asking. I finally found the way. I've decided the reason I was chosen to get this disease is in order to educate and help others. Knowledge is power as "They" say. So please, make a donation. A nickel, a dime, or a million dollars. Why? D-CAUSE I said so..

Bust A Move!
Liz

Message + instructions from Karen:

Hi Everyone,

As most of you know, one weekend last October I participated in the approx. 40 mile Avon Walk for Breast Cancer. It was quite an experience. I was so inspired by all the people I met along the way - cancer survivors and those walking in memory of family and friends who lost the battle.

So - I must try again this year. Maybe this year we can finally find a cure.

I need to raise at least $1800. If you would like to help it would mean a lot. You can make your donation by going to the link below or if you would prefer to write a check, just contact me (kmarwin@nyc.rr.com) and I'll send you the form.

Love,
Karen

email: kmarwin@nyc.rr.com

Or viisit thisweb address:

http://info.avonfoundation.org/site/TR/Walk2007/NewYork?px=2504176&pg=personal&fr_id=1285&et=mCHYhe9q6S5mrsUS9ggSeA..&s_tafId=150773

Important: Some email systems may send your response to the Avon Foundation, not to your walker/donor when you push "reply". Before "sending", please confirm that your message is addressed to your intended recipient (above). If info@avonfoundation.org appears as a recipient, please delete and add the correct recipient email.

WEAR THE RIBBON!!

IF YOU CARE TO WALK ALONG WITH KAREN, SET A GOAL OF AT LEAST $1000 AND SIGN UP AND WALK WITH HER!!! IT'S EASY TO RAISE THAT MUCH BY OCTOBER. YOU'D BE SURPRISED HOW ENTHUSED PEOPLE ARE FOR YOU TO BE WALKING FOR A CAUSE!!

And Then There Were Three

Hello all,

This is a quick recap of today's meeting with Dr. Leslie Montgomery at Sloan Kettering.

I (as well as Mom) really liked her. She was very thorough, well-spoken, polished, informative, confident, had great bedside manner. And there is an overall feeling of confidence you get while being in the hands of a SK doc.

As the others agreed, I will need an bi-lateral breast MRI which I thankfully was able to schedule tomorrow. (For those who want all the 411, this must be scheduled 1-14 days from the 1st day of your cycle). I will get this done at Westside Radiology. The results as we know by now, will show if anything else is in the L+R side. In addition to this, it was suggested I go for a core biopsy. This is similar to the fine needle aspiration I got but done with a much larger needle. This will help determine what kind of cancer it is.

Those results take only a few days to get back.

Dr. Montgomery believes there is a lot of validity to the BRACA testing just like Estabrook did. I will opt to get this test done b/c it's important to know the results even if I didn't take the radical approach suggested (removal of ovaries and breasts, the former being even a bigger priority since there is no good testing for it and I'd have a greater chance of getting OC. BUT, let's see and hope that I test negative for that).

Re surgery, I was under the impression that I could get a lumpectomy and go through the 5-6 weeks radiation and if later I decide I don't like the way I look, I could then opt for reconstructive surgery. This approach, however, was not recommended by this dr. b/c after the radiation, one is more susceptible to infection, you don't heal as well, etc. So a lot of thought must be put into this before surgery--that is, do I go for just the lumpectomy or the mastectomy (in addition to the sentintel node removal).

SK recommends everyone getting chemotherapy if your tumor is 1cm or larger. The type of chemo though would depend on the cancer, size, etc. There's all the hormone testing that needs to be done--do the receptors react positive (which means hormones are responsible for creating cancer) in which case you go on the hormone therapy (eg. tamoxofin) for five years.

In the future, after all this is resolved, I would go stricltly for MRI's vs. Mammos and watched like a hawk. This is due to the young age at which I got this @#$@#$%#$^.

Once again, we cannot know anything until the results are in. I am just recapping what this dr said. I definitely am understanding more and more as I speak to more dr's and read the info that's out there.

I am as calm as I can be. I am surrounded by some really smart people and I don't live in a 3rd world country. And I have all of you to thank for reaching out.

Stay tuned for the next installment on the boob tube. Coming attractions include MRI and biopsy results.

Talk about reality tv.

Best,
Liz

2nd Doctor

Well, today tried my patience a bit. The dr. was quite late, I bumped heads with the receptionist and I felt like I was getting some mixed messages.

The dr did two aspirations thinking she felt something else but it turned out to be fine, it just hurt. A lot. There was someone in charge of "education" who was confusing me as well as interrupting me while trying to answer questions she asked. She made a point of mentioning that she was eager to leave before the rain started. As if I cared if she got her hair wet. Of course I am sensitive to everything at the moment but I needed her to be sensitive to that.

Anyway, the same thing... get the MRI and see if there are any areas that didn't show up on the mammo and sono. Then we'll determine stage of cancer and how to treat it. This dr. seemed on the fence about BRCA testing. I don't think they like to bad mouth other drs but it was something I definitely sensed; maybe it's just that I didn't seem like a likely candidate. She also felt I might want to lean towards getting a mastectomy b/c the lumpectomy plus radiation may distort things a bit. This was clearly from an aesthetic perspective b/c of course at this point we don't know what else may appear. It is something at this moment I am struggling with but with a more specific diagnosis I will be able to come to some sort of decision. I am also considering consulting with a plastic surgeon to discuss the various scenarios. In the meantime, I really appreciated her thoughts on the subject.

This dr also agreed with doing a sentinel node removal as the results thus far are favoring that the cancer is invasive (vs in situ which means it stays confined to the one area it started). They take two nodes out and sometimes more if necessary. There is a risk of hand and arm swelling so in the future would just be careful to get blood removed from my left arm, be careful of getting cuts and properly cleaning them, etc Another thing to look forward too.

I will say that despite a little chaos when I was there, they leave you with a lot of informational packets and tools that help keep you better organized and focused.

I've a good feeling about the dr I'm seeing at Sloan Kettering on Thurs.

Stay tuned.
Liz

Nom de Boob

Liz-

I could not help noticing how you have been trotting out quite a few breast-related puns. In light of this, I think it is high time you named this annoying interloper of yours. Which brings me to...

TOP TEN SUGGESTED NAMES FOR LIZ’S TOP SHELF VISITOR

10. The Hooter Hobo
9. Cousin Tit
8. Boobie McGee
7. Thoroughly Melon Millie
6. My Bosom Buddy
5. Lumpy
4. The Good Tumor Man
3. Jive Mutha Jugger
2. Titty-Cent
1. The Funbag Freeloader


If none of these suits you, please feel free to make up your own.

cal

What, me worry?

Friends, Family and Cat Lovers,

As you know, I am not a doctor, nor do I play one on TV. But there is this wonderful thing called the internet on which you can look up all sorts of medical terms and then pretend to speak like one.

It seems that whichever (make sure you whisper the next word as you hold your hands to your chest really tight) cancer (there, I said it) I have can be taken care of and there should be no need to worry. I believe that based on my reports which I calmly reread, given the size of the (OK, the next word I don't like) tumor, and the info I've found, this thing will get cut out and we can say, "Buh-bye," to the evil doer.

These cancers are found more and more thanks to the help of mammograms which I will tell people saved my life. (That, my common sense to get one, and the doctor who read the report.) Alas, if this thing went untreated, THEN there would be a problem. But given the nature of these cancers and the point at which they--really one of them-- showed up, I don't think there is any great likelihood that it has spread.

The next step is to see the dr. on Tuesday afternoon and then we'll set up an appt for the procedure. I do have plans to see a 2nd dr. for another opinion within the same time frame. The results of the lumpectomy will determine which of these wimpy cancers butts I'll have kicked once removed.

I am acting as fast as I can and my ducks are all lined up in a row. Before you know it, the only thing I'll have to show for this is an ugly scar, withdrawal from Diet Coke and a serious wake up call that life really is as short as "they" say.

So, let's all remain positive for this will be a thing of the past. But, for all you young ladies out there, make sure you set up your mammo appts NOW. It is not too early, not to late. Just do it. It is why we have insurance, even if it sometimes stinks.

Thanks for all of your concern.

I remain happy, healthy and positive and love you all,

Elizabeth