IYO, do I have a reason to be ticked?

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Colette37
Colette37 Member Posts: 387

I am 37 and on March 17 I learned that I joined you ladies in being diagnosed with breast cancer.  I found the lump myself after nursing my daughter on March 6th (of course, that was 8 o'clock on a Friday night)  The PA sent me to a surgeon (who a week after I saw him went on vacation) and did not give me the option to see any of his other partners in his group to try to get the testing started.  Although I was able to see a Onc and the Onc wanted to get things rolling ASAP.

 April 7th they put in a port which I could never use for the intended use anyway because it was leaking into my shoulder.  On top of this fact, I also had an allergic reaction to the opsite tape and had blisters all over my chest because of it.  Oh, and the stupid surgeon put the port on the SAME SIDE that I have the breast cancer in, which was a poor choice since I am going to have surgery on that side which would be bad for the port, I also read about how having the port on the same side as the cancer increases your risk for lymphedema.  I am refusing any other port to be put in due to my horror that occurred with the first one.  To make matters worse, and what prompted me to ask if I have a right to be ticked, is that the idiotic surgeon did NOT do any sentinel lymph node dissection at that time, BEFORE I started chemo.  So I do not know the true stage that I am in or if it got into any of the lymph nodes at all.

April 8th, I had an MRI guided biopsy in BOTH breasts.  I am so glad that I used some xanax and vicoden to get me through it because it was as bad as child birth.  I have 3 kids and 2 were born without any pain medicine.  This is the one thing that the surgeon did that was fairly good.

April 9th I started chemo.  Taxotere, Carboplaten, and Herceptin.

April 10th I had an ultrasound guided biopsy of one enlarged lymph node in my armpit, which came back negative for cancer.

The "original" plan was to have three chemo treatments, followed via a lumpectomy, followed via 3 more chemo treatments and radiation.  The more I learned about radiation, the less that I want to automatically have that treatment, if at all possible.  Also, upon going to Seattle (I originally started out in Olympia, Washington) I learned, that if I wanted BOTH breasts removed that the insurances will cover it if I have cancer in one breast.  I seem to get the run around here in Olympia when I asked that question and they implied that only one breast would be covered.  This also affects my decision making in the long run, because I am only 37 and I have 3 kids an 8 and a 4 year old, and a 9 month old.  I wanted ALL my options and the idiotic surgeon in Olympia didn't seem to know what is usually accepted or if he did, he did not look at the longevity for when treating me or at preventing secondary problems.  Even my Onc seemed to be irritated with him.

Then on May 4th I had a major allergic reaction to the taxotere and the Onc changed it to Abraxane.  Which now I am waiting on my insurance to give the Ok for it since it is a more expensive drug.

Thanks for reading my long post, I am just really irritated at the surgeon upon going to Seattle and having them tell me things that made much more sense than the cr@p that the surgeon in Olympia was feeding me.

Colette

Comments

  • hollyann
    hollyann Member Posts: 2,992
    edited May 2009

    WOW Collette, he put you thru the wringer!......Why on earth did he start you on chemo before even knowing your stage or anything like that?....You have every right ot be upset and angry!....Collette run from this man...Run fast.....He sounds like the biggest quack in the world......Hope this new doctor does better.....As far as a prophylactic mastectomy,  insurance does cover it and also reconstruction......They have to by law now.......Also your insurance has to cover what ever meds your doctor orders......Same reason.......Good luck to you and lots of hugs and love........

  • Tabbygirl521
    Tabbygirl521 Member Posts: 193
    edited May 2009

    Well...I'm ticked just READING about this. :(  Just the fact that your MRI-guided biopsy hurt is amazing - I had one recently (in Seattle, at Virginia Mason) and felt NOTHING. The doctor was very careful to numb everything completely. And the other things you mention are just horrible. Are you able to continue treatment in Seattle? I know that's a haul from Olympia but doable, perhaps?

    Angela 

  • Colette37
    Colette37 Member Posts: 387
    edited May 2009

    Holly, Thank you for the information.  This is what I found out from Seattle too.

    Tabby, I had the MRI done in Tacoma at the "Carol Milgard Breast Cancer Center" It was so bad that the MRI tech who happened to be a guy was squeezing my hand and I told him to squeeze harder and he was afraid that he was going to break my hand!  I am going to continue to go to Seattle for the surgery, but keep my Onc here in Olympia because of the distance.

    Because of the experiance that I had with the MRI biopsy, I am seriously looking to just having both of them removed and I feel better that I know that the insurance WILL cover it.  If I have that done then I will have to have implants put in because I have a bad back (scoliosis in my upper spine and spinabifida occulta in my lower spine) I wont be able to take the muscles from my stomach for the recon.  The expanders wont be fun, but that is Ok.

    Madalyn, I did fire the surgeon and the more I learn about it, the better that I feel about it.  He was an idiot and did multiple things wrong.  His name is Dr. Dietz in Olympia.  He is not a surgeon to go to if you have breast cancer!

    Reading these posts helps me because it gives me experiances of other women and lets me know that I made the right choice for changing Dr.

    I now have Dr. Lee at Swedish in Seattle.  She is wonderful and was not happy with what Dr. Dietz did here in Olympia.  The driving is a small thing when you are talking about my life in the balance.

    Thanks for all the posts.

    Hugs,

    Colette

  • denise1962
    denise1962 Member Posts: 193
    edited May 2009

    Colette

    First I am sorry for what you had to go through, and am glad that you found a doctor that seems to be better. May I suggest getting a port put in when you have your mast. It can really make a difference. I have had 2 ports in my 3 years of this. And yes you do have a reason to be TICKED.

    Denise

  • PattyS
    PattyS Member Posts: 534
    edited May 2009

    Colette,

    So sorry you are having to go through all of this. It's hard enough making the decisions we have to make regarding our treatment plan. But then to have a doctor your not sure of must make all the decisions even harder.

    Wishing you the best with your new doctor.

  • Tabbygirl521
    Tabbygirl521 Member Posts: 193
    edited May 2009

    Colette, I'm so glad you have other doctors lined up. A friend of mine just had a double mast at Swedish on Thursday (what a week - my surgery was at VM on Monday...crazy coincidence). I am drawing a blank on her surgeon's name but i'll see if it was Dr Lee - whoever it was, I know they did a fine job and my friend was feeling pretty darn good by Friday morning. Swedish is a great place to be, as I'm sure you know. 

     If I can get a rave review on Dr Lee, I'll let you know! :)

    Angela 

  • Triciaski
    Triciaski Member Posts: 145
    edited May 2009

    I think that with a 5 cm tumor, it's not unusual to do chemo before surgery to shrink the tumor, and it would not be typical, either, to do an SNB before surgery. As many of us can tell you, the SNB surgery is more involved and the recovery more complicated than is the lumpectomy.

    However, I agree that the surgeon in Olympia doesn't sound very on top of things. I hope you have a better experience and get top notch care in Seattle.

    Tricia

  • pshelton
    pshelton Member Posts: 140
    edited May 2009

    Hi Collette, 

    Hope things are getting better for you and sorry your going through what you have because it doesn't make any sense the way your surgeon was going.  I'm a nurse so I do have an advantage in knowing the way it should progress so I get so frustrated when I hear someone has to go through this because they are not going to know and unfortunately have to trust someone like you did.  I really hope things are going better now.  I would offer one suggestion, check out the hospital where you are going to go now, see if they have their NCI (National Cancer Institute) designation. 

     Also, if you did opt for a bilateral mastectomy, yes it is covered by insurance.  I opted for a bilateral because of my age and because I have multifocal cancer and two different forms of cancer in the left breast.  It took me about a week to make that decision and I am so glad I did.

    Any type of reconstruction will be covered as well and it will be covered even if you chose to wait a year or two before proceeding with it.

    Good luck and sending prayers out for you,

    Paula 

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