Our Mayo trip was not very eventful, which is a good thing. I have always been incredibly impressed with how efficiently the medical process runs at the Mayo facility. Our first appointment was at 7:00 a.m. and by 2:00 we had completed two consults, labs with the results, we were set up for our next two appointments in April and surgery was penciled in. We also had time to enjoy a delicious sit down brunch in that time frame as well.
One of the new things I learned while down at Mayo was the cancer I am dealing with is hormone negative and Her2 positive. This makes sense, because I am currently taking Tamoxifen which should prevent any hormone positive cancers from growing. I stopped my Her2 targeted treatment in April of 2011 because standard protocol for treatment for that drug was one year.
No official decisions have been made on post surgery treatment. We will wait until final pathology is completed after surgery and then I will be referred to a medical oncologist to see what, if any, post surgery treatment is needed. They did make me aware that chemotherapy is still on the table as a possible treatment option. However, one of the toughest drugs I completed last time, Adriamycin, will not be an option since I received my maximum life time dose last time. I was relieved to hear that. They were also reassuring in the fact that while one of the toughest drugs to tolerate (Adriamycin) is out of the question for me this time, there are a lot of other options out there to effectively treat breast cancer in my situation.
Mayo did not even mention the possibility of radiation to me. I would be OK with keeping radiation as one of the breast cancer treatments I have not experienced. However, I am still keeping it in the back of my mind as a possibility, just because I know from experience that surgery can lead to unexpected findings.
The pathologist at Mayo retested my biopsy sample and confirmed that we are indeed dealing with a Paget's disease breast cancer. I was led to believe by the professionals I saw at Mayo that, while any cancer recurrence is definitely concerning, Paget's disease is one of the most treatable breast cancer recurrences to deal with.
Tentatively, surgery is penciled in for sometime during the week after Easter. We will know more by next week. I feel so much better just having a rough idea as to when surgery will take place.
Thursday, March 26, 2015
Thursday, March 19, 2015
Details
Now that we've had some time to process what is going on, I'd like to give an update which is more specific as to what we are dealing with and how we are going to proceed.
I was diagnosed with a very rare breast cancer called Paget's disease. Basically, when I had my mastectomies down at Mayo they figured I was a good candidate for mastectomies which leave more of the breast tissue intact. This made reconstructive surgery more appealing to me, and more than likely the emotional healing a little easier as well. However, I was warned this procedure would increase my chance of a local recurrence, be it ever so slight. I took the risk, and that is probably why we are where we are today.
After researching Paget's disease, I learned that it makes up less than 5% of all breast cancer cases and has around a 1% chance of occurring after the type of surgery I had. Most of the time Paget's presents with an underlying breast cancer which could be invasive, but considering most of my breast tissue has been removed and the fact that I had a clear breast MRI the end of February, that shouldn't be the case for me. My biopsy only showed non-invasive cancer, but the surgeon did say there is a small chance invasive cancer could be found in the additional tissue removed during surgery.
We were very pleased with our surgeon who did the biopsy in Fargo. He possessed excellent bedside manner, was very knowledgeable and he took the time to request my surgery notes from Mayo. Treatment in Fargo was appealing until I started researching and discovered exactly how rare Paget's disease is, and how the prognosis is decreased in younger women and women with Her2+ cancer. I have one shot at this, and I'm making it the best shot I have. I have decided to go back down to Mayo Clinic for treatment in hopes they will have had more experience with the scenario I'm dealing with and be able to advise the most forward treatment available.
So once again, we will be traveling to Mayo Clinic to see what they advise for a treatment plan. We leave Monday and I don't know when we will be back.
I have no regrets about the choices I made for treatment and reconstruction five years ago. That is the path I needed to take to process what had happened to me and now I'm moving on. Is the experience I'm having now hard? Yes. However, emotionally I believe I'm in a better place today than I was five years ago. Still feeling blessed....
I was diagnosed with a very rare breast cancer called Paget's disease. Basically, when I had my mastectomies down at Mayo they figured I was a good candidate for mastectomies which leave more of the breast tissue intact. This made reconstructive surgery more appealing to me, and more than likely the emotional healing a little easier as well. However, I was warned this procedure would increase my chance of a local recurrence, be it ever so slight. I took the risk, and that is probably why we are where we are today.
After researching Paget's disease, I learned that it makes up less than 5% of all breast cancer cases and has around a 1% chance of occurring after the type of surgery I had. Most of the time Paget's presents with an underlying breast cancer which could be invasive, but considering most of my breast tissue has been removed and the fact that I had a clear breast MRI the end of February, that shouldn't be the case for me. My biopsy only showed non-invasive cancer, but the surgeon did say there is a small chance invasive cancer could be found in the additional tissue removed during surgery.
We were very pleased with our surgeon who did the biopsy in Fargo. He possessed excellent bedside manner, was very knowledgeable and he took the time to request my surgery notes from Mayo. Treatment in Fargo was appealing until I started researching and discovered exactly how rare Paget's disease is, and how the prognosis is decreased in younger women and women with Her2+ cancer. I have one shot at this, and I'm making it the best shot I have. I have decided to go back down to Mayo Clinic for treatment in hopes they will have had more experience with the scenario I'm dealing with and be able to advise the most forward treatment available.
So once again, we will be traveling to Mayo Clinic to see what they advise for a treatment plan. We leave Monday and I don't know when we will be back.
I have no regrets about the choices I made for treatment and reconstruction five years ago. That is the path I needed to take to process what had happened to me and now I'm moving on. Is the experience I'm having now hard? Yes. However, emotionally I believe I'm in a better place today than I was five years ago. Still feeling blessed....
Friday, March 13, 2015
Just Be Held
We got our biopsy news yesterday. It was not what we had hoped. I do have cancer again. It is more than likely a recurrence of the cancer I had before. This scenario is extremely rare, but does happen. My surgeon did assure me this is a very treatable recurrence. Treatment should just be surgery and if there are any surprises during surgery, radiation may be a treatment option as well.
A friend shared the song I linked here with me. It has been a blessing to me over the past couple of days. I hope it blesses you as well.
Could you please pray for us today? The night was long, as sleep eluded us, and we are tackling a full day of school and tending a little one with a bad case of the stomach flu.
Wednesday, March 11, 2015
Cloudy With A 100% Chance Of Praise
When the storm clouds accumulate suddenly... when you don't have a clear view of the horizon... when the thunder rumbles the depths of your soul... when the warning sirens begin to voice their concern, one should take shelter. Taking shelter is not simply finding any structure and trusting in it. Taking shelter requires analysis. One must seek a place free from flying debris, windows and unsafe structure. Your life depends on making the best choice possible.
Psalm 121:1-2
"I lift up my eyes to the hills-- where does my help come from? My help comes from the LORD, the Maker of heaven and earth."
My help and my shelter come from the Maker of heaven and earth. How amazing is it that the Maker of the wonderment which surrounds us loves us so intimately that He is there to weather every storm which comes our way with each and every one of us? Please take the time to read the rest of Psalm 121. It is such a comforting Psalm.
My storm is forming on the horizon. I don't have a clear view. The sirens are begin to sound. I am seeking my shelter in the Maker. Maybe this storm will pass on either side of me, and the clouds will quickly dissipate and the rainbow will appear. I would love to praise the Maker in the beams of sunshine. Or maybe this will be a very cloudy and dreary season, during which the Maker will carry me and surround me with His provision and peace and I will praise Him in the storm. Either way, my help comes from the Lord!
My apologies to those friends and family whom are so near and dear to us. I wish I had the emotional strength to visit with each and every one of you and talk this through, but the reality is I do not... not today. When I see you or talk to you, please don't be afraid to bring this up. I'm letting you all know at the same time, in this way, because I don't know how to initiate the following conversation.
You: "Hey! How's it going?"
Me: "Good! Oh, wait. I just lied. Please forgive me. You know that cancer I had five years ago? Well, the doctors think there is a small chance it may be rearing its ugly head again. I have an area of skin which has thickened, has bleed and has an odd appearance. My oncologist advised we figure out what is going on. Yesterday, I had an initial consult with a surgeon who says the skin issue could be a dermatitis, or it could be a cancer recurrence. Both scenarios present exactly the same way. The surgeon did an immediate biopsy. I should know by Friday if it is cancer or not."
Yesterday was the fifth biopsy I've ever had. Three out of my four previous biopsies have come back as cancer. I've decided biopsies give me anxiety. Please pray for peace for Jay, our kids and myself. I will let you know the results when we get them. Thank you!
Psalm 121:1-2
"I lift up my eyes to the hills-- where does my help come from? My help comes from the LORD, the Maker of heaven and earth."
My help and my shelter come from the Maker of heaven and earth. How amazing is it that the Maker of the wonderment which surrounds us loves us so intimately that He is there to weather every storm which comes our way with each and every one of us? Please take the time to read the rest of Psalm 121. It is such a comforting Psalm.
My storm is forming on the horizon. I don't have a clear view. The sirens are begin to sound. I am seeking my shelter in the Maker. Maybe this storm will pass on either side of me, and the clouds will quickly dissipate and the rainbow will appear. I would love to praise the Maker in the beams of sunshine. Or maybe this will be a very cloudy and dreary season, during which the Maker will carry me and surround me with His provision and peace and I will praise Him in the storm. Either way, my help comes from the Lord!
My apologies to those friends and family whom are so near and dear to us. I wish I had the emotional strength to visit with each and every one of you and talk this through, but the reality is I do not... not today. When I see you or talk to you, please don't be afraid to bring this up. I'm letting you all know at the same time, in this way, because I don't know how to initiate the following conversation.
You: "Hey! How's it going?"
Me: "Good! Oh, wait. I just lied. Please forgive me. You know that cancer I had five years ago? Well, the doctors think there is a small chance it may be rearing its ugly head again. I have an area of skin which has thickened, has bleed and has an odd appearance. My oncologist advised we figure out what is going on. Yesterday, I had an initial consult with a surgeon who says the skin issue could be a dermatitis, or it could be a cancer recurrence. Both scenarios present exactly the same way. The surgeon did an immediate biopsy. I should know by Friday if it is cancer or not."
Yesterday was the fifth biopsy I've ever had. Three out of my four previous biopsies have come back as cancer. I've decided biopsies give me anxiety. Please pray for peace for Jay, our kids and myself. I will let you know the results when we get them. Thank you!
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