November 2009 - Breast Cancer No Cure - A lot to learn quickly!

The true fact is that there is no known cure for breast cancer. That is very unfortunate since current statistics show that 1 in 8 women will be diagnosed with breast cancer during their lifetime. That is a whole lot of wives, mothers, daughters, sisters, grandmothers, aunts and friends. It can almost boggle the mind when you really stop to think that 1 in 8 women you know will develop breast cancer at some time in their life. Personally, I can tell you that no one is ready to hear the words that they have breast cancer; however, once you do hear those words, there will be a lot of decisions that will have to be made and relatively quick.

Trying to learn everything at once about breast cancer from the tests, definitions, treatment options, and even the different types of reconstruction available to you is not easy to learn when you have just been diagnosed with it. So please learn all that you can now to either make the best decisions for yourself or for that someone you love in the future. According to the National Cancer Institute, Breast Cancer is the most common type of cancer among women in the United States (other than skin cancer). Each year in the United States, more than 192,000 women are diagnosed with breast cancer. Although more rare, breast cancer also develops in men and each year about 2,000 men in this country learn they have breast cancer.

My breast cancer was stage 2 invasive ductal carcinoma and quite large at 3.7 cm which required a total mastectomy. There is a separate blog with the emails that I sent out to my family and friends, all the way from learning that I had breast cancer through to the final reconstruction, so you can walk all the way through my journey if you like. This blog contains an archive of some of the emails I found in my sent box that I sent out to family and friends during my journey. When I was diagnosed, I really wanted to find someone else that had been through it and what their experience was like. You will have to start from the bottom up on the headings to the right since the blogs stack on top of each other.

Eventually, when I have a little more time, I will come back and "clean up" the unnecesary information. Also, I plan to add more medical information from all of my notes, and will blog more on my 2nd reconstructive surgery (breast reduction and lift on the unaffected breast for symmetrical purposes - now I am not only "high and lifted up" spiritually but also physically, ha!). But until the next blog, if you have just been diagnosed, perhaps my journey with the timeline through the experience of finding out I had breast cancer, to learning that I must have a total mastectomy, through to my decisions on which reconstruction and the recovery will help you and hopefully bring you hope and peace.

If you have been diagnosed with breast cancer

If you have already been diagnosed with breast cancer – take a deep breath! It will definitely be a journey, but you will find a lot of support and as someone told me when I was first diagnosed, “You just joined an elite club you never planned on joining, but it is a great sisterhood.” There is a LOT to learn and a whole lot of decisions to make, but there is a great multitude of resources out there and best of all there are a ton of SURVIVORS! I know because praise God, I am one. Actually, I am still recovering from the second step of my own breast reconstruction. Let me say first of all that modern technology and reconstructive surgery are absolutely miraculous and magnificent. Anyone that does not know me would ever guess that I have had a mastectomy, even if I leaned over and they could accidentally see down my blouse. My breast cancer was stage 2 invasive ductal carcinoma and quite large at 3.7 cm. There is a separate blog with the emails that I sent out to my family and friends, all the way from learning that I had breast cancer through to the final reconstruction, so you can walk all the way through my journey if you like.

In my case, I was able to be reconstructed immediately following my mastectomy and never had to know what it is like to wake up without a breast. I chose an immediate tram flap reconstruction so that it would be more natural and so that I would have a blood supply to the breast (meaning if there was to be an infection - it would respond to antibiotics). However, I have met women who are extremely happy with their implants and very happy they made that decision. Unfortunately, not all women can be immediately reconstructed and may have to wait. My dear friend Pam recently had reconstruction after waiting nearly two years because she had to have a lot of radiation. Nevertheless, she looks and feels great now. So whatever your case, have courage and hope, that there will be a better tomorrow!

If you have not yet been diagnosed with breast cancer

For those who have not been diagnosed with breast cancer, the National Cancer Institute states the best way to protect yourself against breast cancer is through early detection with self breast exams and regular screening mammograms. Treatment for breast cancer is more likely to work well when it is detected early. A mammogram can often show a lump before it can be felt. Women in their 40s and older should have mammograms every 1 or 2 years. Women who are younger than 40 and have risk factors for breast cancer should ask their health care provider whether to have mammograms and how often to have them.

If your mammogram shows an abnormal area of the breast, your doctor may order more detailed images of the area. Doctors use diagnostic mammograms to learn more about unusual breast changes, such as a lump, pain, changes in breast size or shape. There are also other imaging tests that may be ordered if an abnormal area is found. An ultrasound test may show whether a lump is solid, filled with fluid (a cyst), or a mixture of both. Cysts usually are not cancer but a solid lump may be cancer. An MRI is another way to get detailed pictures of breast tissue.

The only way to be absolutely sure if cancer is present is to perform a biopsy. Your doctor may refer you to a surgeon or breast disease specialist for a biopsy. The surgeon or doctor will remove fluid or tissue from your breast in one of several ways:

• Fine-needle aspiration biopsy: Your doctor uses a thin needle to remove cells or fluid from a breast lump.
• Core biopsy: Your doctor uses a wide needle to remove a sample of breast tissue
• Skin biopsy: If there are skin changes on your breast your doctor may take a small sample of skin.
• Surgical biopsy: Your surgeon removes a sample of tissue
  

A pathologist will check the tissue or fluid removed from your breast for cancer cells. If cancer cells are found, the pathologist can tell what kind of cancer it is. The most common type of breast cancer is ductal carcinoma. It begins in the cells that line the breast ducts. Lobular carcinoma is another type. It begins in the lobules of the breast.

If you are diagnosed with breast cancer, your doctor may order special lab tests on the breast tissue that was removed. It may take several weeks to get the results of these tests. The test results help your doctor decide which cancer treatments may be options for you.

The National Cancer Institute provides a booklet about diagnosis, treatment choices by stage, breast reconstruction, and follow-up care. It also describes how to take part in research studies. Learning about medical care of breast cancer can help you take an active part in making the right choices about your care.

http://www.cancer.gov/cancertopics/wyntk/breast/page1

The NCI provides publications about cancer, including the booklets and fact sheets mentioned in this booklet. You may order these publications by telephone, on the Internet, or by mail. You may also read them online and print your own copy.

• By telephone – People in the United States and its territories may order these and other NCI publications by calling the NCI Cancer Information Service at 1-800-4-CANCER (1-800-422-6237)
• On the Internet: Many NCI publications may be viewed, downloaded, and ordered from http://www.cancer.gov/publications
• On the internet. People in the United States and its territories may use their website to order printed copies. Their website also explains how people outside the United States can mail or fax their requests for NCI booklets.
• By mail: NCI publications may be ordered by writing to the address below:
  
  Publications Ordering Service National Cancer Institute
• P.O. Box 24128
  Baltimore, MD21227
  
  

May 26, 2009 No Chemo for me - Tamoxifen

Hello all,

Hope you all had a great Memorial Day weekend and that some of you may have even remembered to dance in the rain! Yesterday marked my 7th week out from the mastectomy/reconstruction surgery and I pray this will be my last update for a while. The final answer is …. I will not be going forward with the chemotherapy treatments. The small benefit percentage (2-4%) was not high enough for me personally. I called my general surgeon last week to go over it all with him again and he said it like this: “Liz, if you don’t take the chemo and the cancer is back in 5 years, you are going to kick yourself for not taking the chemo.” I agreed; but then he said, “On the other hand, if you do take the chemo and the cancer is back in 5 years, you are really going to kick yourself!” I really like this surgeon and his dry humor. Please note that he has been very honest in his opinion, along with the rest of my doctors, that they really do not know what the right answer is for chemo in my category, and that it all comes down to my own personal decision.

Each person must face their own battles and decisions and this one was mine. I have held out making the decision hoping and praying to hear what I thought the Lord was leading me to do. To be honest, I did not receive any great revelation or the supernatural answer that I was hoping for. What I do feel, and have felt in my spirit since the beginning, is His supernatural peace in all of this. Truly, that is enough for me because I know that nothing is going to happen to me that He does not allow. Therefore, I really cannot make a “wrong” decision when I trust Him with my life. I feel that I have taken the best advice from the medical doctors to have a total mastectomy and there are no regrets. Also, the reconstruction is great to the point that no one would guess that I had undergone a total mastectomy if they passed me on the street. Thank the Lord for the miracles of modern surgery!

Friday, I called to tell the oncologist no to chemotherapy and he started me immediately on my hormone therapy Tamoxifen, which gives me the second highest percentage of no recurrence behind the mastectomy. So far, I am not having any problems with this medication, and I will see him back in 10 days for my blood work. Also, had my last appointment with the plastic surgeon until another 4 months as long as there are no problems.

Although I am doing really well, I do still have abdominal swelling, which they said could take another month or two to go down. Reclining and walking is relatively easy, but sitting straight up is the hardest for me and that is what I am working on trying to improve right now. It is hard not only on my abdomen but also hard on my back. So, please continue to pray for my recovery anytime you think of me.

Thank you again so much for all of the love shared with us during this time in our lives and especially for all the prayers sent to the throne room of God on my behalf.

Love to all,
Liz

P.S. Please remember that two weeks prior to my cancer diagnosis I was standing in the church parking lot talking to our Associate Pastor about the number of people on our prayer list that had cancer. Of course, I had absolutely no idea that cancer was sitting in my own body at the time and that I would be the new name at the top of the list 2 weeks later. Do not take anything for granted and stay on guard!

May 14, 2009 Oncologist Meeting on Chemo

Hi Everyone,

We met with the oncologist yesterday and he basically went over the same information that my general surgeon went over with us... that I was in the intermediate range, that it was a real toss up, and that no one really knows the answer on what is best. He said 5 years ago they would have definitely recommended chemo, but they are not so sure about this intermediate category anymore, which is why there is a new study being done on it by UAB. My general surgeon had also told us about the clinical study where they randomly divide the group of women in half. One half takes chemo and the other half does not and then they will study what happens to this group of women. Again, my general surgeon leaned against me doing the chemo. The oncologist said it was up to me, but felt chemo would probably give me a 3-4% improvement, but only I could decide if that percentage was worth it to me.

He then offered to call the doctor in charge of the UAB study to see if I could get into the study and also to see what she would advise for my circumstances. She advised chemo, because she said that I am in the higher end of the intermediate range, but if I did the study it would be randomly chosen as to who would and would not receive chemo. He again reminded me that no one really knows what is best in this particular group, proven by the fact that they are conducting this test and allowing 50% of the women in this group to not take chemo. In other words, if they knew chemo would help them, they would not allow 50% of the women not to take it.

I told him that I would let him know by the end of the week after I have had time to think and pray about it. Fortunately, Monica is in the same building and she is going to verify that we are correct in our understanding of what they are telling us. With our current understanding, John and I are leaning against having the chemo treatments. If this holds true, then I will give them the decision tomorrow (or I may wait until Monday to pray on it over the weekend) that we are ready to move forward with the hormonal therapy and forego the chemo treatments. Either way, I will let you all know when my "final answer" comes. A friend and I were talking last night and discussed that it would have been so easy if the test had come down on one side or the other; however, he reminded me that the intermediate range is what keeps me dependent on trusting God with my decision and future. We all know that everything is in His hands regardless, and that applies to all of us. That is a very comforting thought for which we can all be thankful! Thank you again for all of your prayers. God is hearing them and trust me that I know He is answering them. To God be the glory forever and ever! Love to all, Liz

May 12, 2009 - I've Gone Wireless!

Hello everyone,

Well, great news - I have finally gone WIRELESS!!!!!!!!! It has been a little over five weeks since my mastectomy/reconstruction surgery and I had the final drainage tube removed late this afternoon. It was still borderline on whether to take it out or not, but I think the length of time, in addition to having to begin a third round of antibiotics, is what made him lean towards pulling it out today. So, even though the drain is out - please pray that my body absorbs the fluid correctly. He said everything was healing nicely and he is happy with the progress that I have made. My concern to him was that for someone who was supposedly getting a tummy tuck out of the deal (since they use 2 of your stomach muscles, fat and all of your stomach skin to rebuild the new breast) I am now at least 4 inches WIDER in the waist than I was before surgery. What's up with that??? He said that I was still very swollen which is normal after this type major surgery and that it could take another month or two to go down. So, if you see me around town looking like a slob - it is because I do not have much to wear that fits me right now. I believe all the women can vouch for me that we are NOT going to buy a larger size for short term use!!!

The surgeon also said that we would schedule step 2 of the reconstructive surgery in 4 to 6 months. In that surgery they will do the finishing work on rebuilding the new breast and then do a breast reduction on the old breast so that it will match the new one. He said that I simply did not have enough material in the tummy to make it the same size as my original. Although, I will have to go down a size or two in bra size, the benefit will be that at least I will get a "lift" job while he's at it. Hey, we always have to be looking for that silver lining, right? Tomorrow (Wednesday) I will go to see the oncologist to find out what method of treatments he suggests. Chemo or no chemo - that is the question. So after I am able to process the information tomorrow, I will try to send out an update tomorrow night. Afterwards, I would value the opinion from anyone that is willing to offer one.

Thank you all again for your prayers and we want you to know that we also pray for all of you. More bad news seems to reach all of our ears daily of terrible things that people are experiencing. Eleanor Roosevelt once made an excellent quote, "When you get to the end of your rope, tie a knot in it and hang on." While that is very good advice, please remember that our heavenly Father is aware of all of our troubles and that He will take care of us and see us all through. This life as we know it is very precious, but we must also keep on the forefront of our minds that it is only a very tiny little speck in time on the spectrum of eternity. Let's all run the race as best as we can and pray that we all finish well. Love to all, Liz

May 7, 2009 - Drainage Too High to Remove

Just a quick update to let you know the surgeon did cancel my appointment again today because of the high drainage amounts. We have now rescheduled for Tuesday. As a very wise friend reminded me, sometimes the best answers to our prayers are not the first one that we seek. That is a wonderful reminder because we have no doubt that God is working it all out for my good and this delay is for a good reason. This will be the last update until next Tuesday evening when I can hopefully give you all a good report that I have been liberated from this final drain. Hope you all have a wonderful and safe Mother's Day weekend!!! Love to all,Liz