Cancer Journey/ HEALTH

No More Chemo & A Plan Of Action

{**The following is an entry from my Caring Bridge journal.  If you would like detailed updates on my health, please visit my Caring Bridge site by clicking here.}

Doctor called today to tell me what was discussed at “Tumor Panel” on Tuesday.   Dr. Midathada and the pathologist that retested my tissues were both there to present my case.

The first thing that was established as the pathologist presented his new findings is that indeed, they all agree it was more than likely all Lobular Cancer from the beginning.  
They came to this conclusion because the stain, which tests for the protein E-cadherin, came back negative.  Here is what I found in my reading about E-cadherin…
More recently studies have shown that infiltrating lobular cancers are estrogen positive…and they lack expression of the protein E-cadherin, which helps cells stick together.  Its absence may help explain why lobular cancers don’t cling together in a nice lump but march cell by cell through the stroma in single file lines forming a diffuse pattern that is often difficult to detect, until tumor is very large.” 
Because both tissue samples tested negative for the E-caderin protein, they believe it is Lobular Carcinoma.  Makes sense to me!
Having this established, they were all in agreement that:
1.) I responded extremely well to chemotherapy.  Lobular cancer usually does not respond that well.  I had a 6 cm tumor that shrunk down to .8 of a centimeter.  That is great.   I had no choice to but do chemo first because of the size of the tumor, it needed to shrink before they could remove it, so treatment would have been the same even if they knew it was Lobular instead of Ductal to begin with.
2.) They do not believe I need more chemotherapy.
It would only shrink my reccurance rate down a couple of notches, and the side affects are just not worth the treatment.  Lobular cancer responds much better to Hormone therapy, so that is the path we want to be on.
There was a consensus that radiation was very important, due to the cancer being .1 centimeter away from my chest wall when they removed it.  I agree.  That is such a tiny margin, I feel like this is an important thing for me to do, despite my dislike for radiation!  I will start radiation in 3 weeks, it will be everyday for 6 weeks.  I should be done around April 1st.  After that, I will take Tamoxifen (a pill) for 5 years, which is the hormone therapy that Lobular cancer responds so well to.

They also discussed whether I should remove my ovaries in the future.  They produce estrogen, which is what fed my cancer.  I am only 34, so I will be 39 when I am done with the Tamoxifen pill.  That is still a ways from menopause, so they think I should consider having them removed.  I am thankful we have 5 years to decide that, as the pill I take suppresses estrogen.
That is all she had for me.  
I had a couple questions for her.
1.) I’ve had rib pain, low on both sides, spots tender to touch.  Also an area round in my back ribs. I had some slight uptake in the ribs in original scans, so it made me really nervous.  My thinking was I have not had chemo treatment since Thanksgiving, and I wondered if something was there if it had time to grow.
Doctor reassured me that if something was there, it would have shown up in the PET scan.   I didn’t like that answer, because the little bit of cancer I had left before surgery did not show up in the PET scan.  She said that was because they were such small areas.  .8 in my lymph node, and .8 left in the tumor area.  She said they need to be at least 1 cm. to show up in a PET scan.  She said I could have another bone scan if I needed peace of mind, but that she felt good about not doing that.  I do not want more radiation, so I am going to sit on it and see if the pain goes away.  My mastectomy was very invasive and has caused all kind of chest and rib pain, it could very well be that.  The area in my back ribs that hurts is just 2 inches from my armpit where the lymph nodes were taken.  They go quite deep into the arm pit to remove those, so that pain could very well be from the trauma of that area.  I am going to do my best not to worry about it, but I will do a bone scan if it just does not get better or if it gets worse.
2.  I’ve also had some pretty intense burning in the area where the tumor used to be.  It has kept me awake the last 2 nights.  
She reassured me that is very normal, due to all the nerves that were cut, especially on that side with the lymph node removal. I have had very little pain on the other side, so its hard not to worry, but I know that lymph node surgery makes everything on that side very sensitive and hard to heal.  Which brings me to:

Physical Therapy

My range of motion in my left arm is not great because of lymph node dissection and nerves that were cut.   I will need to be able to raise it over my head for radiation, so I’m concerned.  Right now, I can raise my elbow up to shoulder height, but no higher.  It is just a painful pulling sensation in my armpit if I try to go higher.  I also am not able to straighten out my arm completely.  It feels like a rubber band pulling on the inside of my arm when I try to straighten it out.  I am nervous about physical therapy–I don’t like pain!!  I do feel very blessed because there are only 2 “lymph system physical therapists” in Lincoln, and the one who many people recommended to me is willing to stay late and get me worked in before radiation.  I was told no at first, but God worked it out!!  I am thankful.

How am I feeling about all of this??

I am so excited that there will be no more chemo.  My hair is 1/2 inch fuzziness, and I did not want to lose that!  I’m ready for hair again.  My last chemo session scared me a bit.  I just felt my body getting starting to get weak and I was so relieved there were not any more sessions.  So thankful.

Although excited, I know there is still some road of this journey to tread. The following would also be my prayer requests:

 -Not sure how I will do with radiation.  It can cause fatigue and skin burning toward the end.  I am also nervous about it ruining my new boob job:) That could very well happen.  Prayers for protection of my new boobs, please!!  I really like them, but I’m trying not to get too attached b/c I know what radiation can do to the one.  🙁
-I am also getting tired of being in the healing phase.  The first 2 weeks I felt like I did great, this last week it seems to be taking longer and I feel impatient.  
-I’m a chicken when it comes to physical therapy.  I just don’t know how my arm will ever go over my head again!  I am ready for it to be able to, because I am vain and miss tying my scarves on my head.  My hats are getting boring:)
Whew!  That was a lot.  Thanks for reading and for all your encouragement.  

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  • Kathy
    January 31, 2011 at 4:23 pm

    oh Amy, I am praying for you! So glad you are done with chemo…yay!! I know how good that feels. And radiation wasn’t so bad really, it was much easier on me than the chemo, so I am praying it will pass quickly for you. I wasn’t so crazy about the tamoxifen and the resulting hot flashes and night sweats etc, but eventually they pass, and we do what we have to in order to survive.

    Hugs and prayers,
    Kathy (8 year breast cancer survivor)

  • Julia
    January 26, 2011 at 1:41 am

    Thank you so much for sharing your story with us! You are such an inspiration and your positive attitude and faith are amazing!! I will keep you in my prayers… You sure look GREAT!


  • colorchic
    January 25, 2011 at 2:29 pm

    Thank you for sharing your story, you leave nothing out which only brings others closer to you. You are a fighter you CAN get through physical therapy, and then you will share with us how awesome and strong you feel! You are such a beautiful woman, inside & out, hat or no hat!
    Love & Hugs

  • Pamela
    January 24, 2011 at 6:43 pm

    I just found your blog to day but it has touched my heart. I’ve put your name on my prayer list. I’ll be praying specifically for physical therapy to be successful quickly. A necessary evil it sounds like. You’ve been through so much but per your picture it must not have affected your beauty.

  • Handy Man, Crafty Woman
    January 23, 2011 at 11:36 pm

    Hugs to you. Thanks for the update.

  • whimsy*couture*sewing*tutorials
    January 22, 2011 at 3:37 pm

    Just finished reading your post and find it VERY inspiring!!! The doctor results are indeed awesome and I am sure that with every single day that will pass you will get stronger and heal a bit more! You have lots of people praying for you and sending good thoughts to you, that alone is awesome and will help you! Don’t worry about the “boredom” in hats…..I’ll have your surprises almost ready and will ship them very soon!
    Love & hugs,

  • Sherrie
    January 22, 2011 at 3:42 pm

    You look great! Your photo reminds me of Anne Heche (who I think is very beautiful). Good luck on your treatment and I will pray for healing and restoration of your body.

  • Samantha
    January 22, 2011 at 1:22 am

    Nothing but good thoughts for you! You’re so brave and inspiring! Your story has been such a wake up call for me. I’m 33 with 2 small kids. I never thought something like this could happen to me…as I know you were thinking the same. Obviously God works in mysterious ways.

  • Corn in my Coffee-Pot
    January 22, 2011 at 7:07 am

    you are beautiful! I love the photo of you here. Your eyes look so clear–
    I am praying for the LORD to comfort you in your time of need and that the pain you are having in your arm and the inability to lift it will subside and you will find relief. I am praying for you to find your patience in Christ and that he will relieve your fears.
    Be blessed- you are an inspiration to me.


  • Kim
    January 22, 2011 at 5:10 am

    Thank you for sharing your story! I tend to skip over sad or depressing or serious blogs but yours I have followed thru, maybe not commented but reading each post. I send many cyber hugs to you as you set out on the next leg of your journey. You are quite an inspiration!!

  • Erin
    January 21, 2011 at 9:56 pm

    I will keep praying for you and your family. Hang in there! Physical Therapy is hard work, BUT just keep in mind that it is working towards feeling better in the end. Do as the therapist instructs…if they say 10, do 10…not 20. Trust me, more is not better! Sending you best wishes on your recovery.

  • Amber Stoneburner
    January 21, 2011 at 5:53 pm

    Amy, you look adorable in the picture! I love the hat on you, but I can understand that hats can get boring. 🙂
    Praying many, many prayers for you! Father is so gracious, and I have seen that in so many ways in your life. Don’t lose heart dear! Much love to you!

  • Cara
    January 21, 2011 at 6:55 pm

    Girl, I will continue to pray, I did a post yesterday to request prayers for some blogs I follow, and your was included:)

    Much love to you!! Cara

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