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Thursday, April 7, 2011

The “A” team, My Story


I went to my Ob/Gyn yesterday for my routine semi-annual checkup.  I have known him for almost 30 years.   He commented that I am four years post treatment, and he can’t believe it. I told him that he was instrumental in my cancer journey and that his support made all the difference.  He made a comment to me that made me realize I need to tell my story.  He said “90% of my patients do not need me.  The other ten, well, they really need me.” Well, he was right, and that is exactly the reason I became a cancer coach….because not everyone has a knight-in-shining armor (or a whole team of them as things turn out).  Sure, he got me through a miscarriage, delivered my two boys; but when cancer struck, I knew I was blessed with an amazing doctor. So here is my story.
There are some things you never forget.  A week after a routine mammogram, the doctor’s office calls and says I need to come in for additional films.  My first thought is, great, they botched something up.  She assures me this is not the case, and could I come in tomorrow.  I do this, they take more films, and I am asked to wait.  A few minutes later, the nurse says the doctor would like to see me.  My heart sinks as I know this cannot be good news. Dr. Berson points to the films on the wall; my left breast resembles the galaxy.  He explains that the white dots are micro-calcifications, and that 30% of the time this is nothing, 30% of the time these are pre-cancerous, and 30% of the time, well it is cancer.  He looks at me quite squarely and says, “This is the 30% where I say you need to get a biopsy right away”.  With that he says I will require a stereo-tactic biopsy, and while he cannot do it, he can recommend an excellent radiologist who can do the procedure.  I leave his office and when I walk into my apartment minutes later (screening facility was in the building next to mine), the phone is ringing.  It is my Ob/Gyn, Marc Engelbert, calling to say that he had just heard and wanted to assure me I would be ok and that he agrees that the radiologist I am to see is top-notch.   I drop my films off at Susan Drossman’s office and after reading them, Susan calls me.  Yes, she can do this procedure and I am to call her office to schedule.  I call and the receptionist says,”Oh, didn’t the doctor tell you she would be away for two weeks?”  No.  True, it was the week before Christmas, but my heart sank.  I called Dr. Engelbert and asked for another recommendation, collected my films and schlepped to this other doctor.  With minutes of seeing my films, he says he cannot do this procedure, that I need a surgical (and more invasive) biopsy.  Scared, I call back Marc and he says if there is any way I can handle the wait, I should wait until Dr. Drossman returns.  Ok, I say, I can do this.  After the procedure, Dr. Drossman tells me that she will call me with the results in 24 hours.  Sure, I think, right.  23 hours later, when my son is home from nursery school with a play-date and a mom I barely know (who is now a dear friend), the phone rings. It is Susan saying she needs to talk to me.  I abruptly tell the mom that I have an important phone call and disappear into the bathroom.  Susan tells me that I have stage one breast cancer and that I need to see a surgeon right away.  She gives me two names and I hang up.  The phone rings before I can dial, and it is Marc, again calling with support and agreeing that either of the doctors suggested would be perfect, but that I should see them both.  I call the first, gone for the weekend, which happened to be one with a Monday holiday.  I call the second, gone too.  I call Susan back and she offers to make the appointments herself.  Ten minutes later she says she was able to reach one at home and he will see me on Monday morning, despite the holiday.  
On Monday, my husband and I see this doctor, a lovely man who examines me, looks at my films and explains my cancer.  He says that he could do a lumpectomy with radiation, am I aware that radiation causes recurrences and new cancers?  Before I can answer, he tells me that it is not of concern here as I have so much cancer in my breast  that he would end up removing so much breast tissue that I wouldn’t have anything left; he suggests a skin- sparing mastectomy with reconstruction.   Oddly, this brings relief.  We leave scared.  I am able to see the other surgeon, Dr. Alex Swistel, a week later.  The doctor walks in with a smile and the first thing he says is I am going to be fine…and we could tell he meant it!  He says that my only option is a mastectomy and asks if I wear evening gowns or bathing suits.  I say not too many gowns, but certainly bathing suits.  He then explains that instead of putting a scar on the side or down the middle of the breast (both obvious with skimpy clothing) he would go in from the crease under the breast.   After answering our questions, I am scheduled for surgery in two and a half weeks…I must wait until the biopsy wound heals.  I ask if it is okay if we go away, perhaps to a spa, is it okay for me to get a massage.  A resounding yes, great idea.  He tells us he will find the plastic surgeon he works with so I don’t have to come back for another appointment.
He leaves and my husband and I say “he’s our man, our ticket out of this mess”.  In walks the plastic surgeon.  Dr. Talmor is wonderful; she explains the different implants and says that because I am so thin, I will need silicone or saline implants (rather than my own fat or tissue).  We are told that for me, silicone would be likely be best, but it was my choice.  I take her advice, she explains the procedure and soon we are on our way.   We go home relieved, much of the fear abated. 
About a week later, I come to the conclusion that I would like to have both breasts removed.  I call Dr. Swistel and he agrees completely.  I also ask him if I can keep my nipples, something I heard was now possible.  He says that in fact, he and Dr. Talmor had just come from a symposium on this and he believes I am a perfect candidate.  He cautions me no promises…if he sees anything he does not like, the nipples come off.  I now feel cared for and in control of my cancer.  I am ready to do battle.
I was the lucky one, and I share my story so that women will realize that they deserve the “A” team.  My team was amazing.  From start to finish, my journey was expedited by helpful and talented doctors. I am eternally grateful to them for empowering me to make the best decisions, for being open minded to my concerns and ideas and for understanding that there is life after cancer. In addition, I had my husband, standing by me, taking notes and providing strength, and it made all the difference. Everyone says you need to be your own advocate, I say you need to bring an advocate. Because at the time in your life when you can barely function, and at a time when you most feel the need to be taken care of, you are the one who is expected to be proactive and assertive, and that is just too much to ask.   
Fighting cancer is a battle for your life; you owe it to yourself to get the best treatment possible for your cancer.  My story is not one of courage, it is one of inspiration.  I wish for all women to be in control of their cancer and to be part of their team.  Teams work together.  If you find it hard to communicate with your team, fire them and find a new one.  Information is empowering; slow down, you have time to make informed decisions.   You owe it to yourself to get it right the first time.

Elyn Jacobs
elyn@elynjacobs.com

4 comments:

  1. I totally agree, if you're not liking what one team is saying find another one. We had to do that when my husband was diagnosed with GBM-4 and now we have a great team of doctors for him!

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  2. Thanks Margee', very glad to hear you found a great team, GMB-4, wow, I wish him the best for a full and speedy recovery.

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  3. Sharon BarringtonMay 5, 2011 at 3:20 PM

    Elyn,

    You have a great blog! Thank you! I am a 14 year breast cancer survivor, and yes, a good team makes all the difference. My cancer was found during my annual mammogram and ultrasound,which I had been having for 17 years. I have a history of breast cancer on both sides of my family and started getting mammograms and ultrasounds when I was about 30.

    My surgeon,Eugene Davidson, was wonderful and like your surgeon, he was careful where he put the incision. My cancer was stage I and I had a lumpectomy. After much research, I asked him not to remove the lump nodes under my arm and he agreed. I had to have a second surgery one week later because they did not have a clear margin (not because of cancer), but after the second surgery, Dr. Davidson told me that they had found cancer in situ (of a different type than the first)in the area and they removed it all.

    My oncologist was a different story. His approach was all the big guns (3-4 rounds of chemo, radiation, and 5 years of Tamoxifen).I did not agree. He was very difficult to talk to so I found another doctor. But I also went to a holistic practice MD who helped me greatly - tweaking my diet(I have had a good diet since early adulthood - my dad died from a heart attack at 54 and it was a wakeup call) and I took a lot of herbs (in particular, Flor-Essence). Also I started doing yoga which helped tremendously. I still do yoga.

    The approach I took is not for everyone, but it has worked for me. And thank you for the information on dairy. I have been allergic to dairy since I was born but my mother, a R.D.,was brainwashed and continued to feed my brother and me dairy, even though our pediatrician told her not to(!). I stopped eating dairy when I was diagnosed with cancer - I think I was "addicted" to it. Now I have no interest in it. I will share your blog with a friend who is a nutritionist. Thank you again,Elyn!

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  4. Hi Sharon, I am so sorry, somehow I missed your post...so many do not appear (have to figure this out. Anyway, thank you for your kind words, for sharing your story and for your advice for all!
    glad you had one good doc and fired the bad one!

    xoe

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