Hello! We've set up this blog to help keep everyone informed of Karen's progress and the cancer's demise. You are welcome to post comments or questions (click on the title of each post and you can read the post and any comments that have been left all in one window as well as "Post a Comment" yourself, or look for the little "# Comments" at the bottom of each post on the main page, click it and follow the directions in the new window on how to add your own comments.) It is my aim to set up the notification function so you can sign up to receive an email whenever a new post is added to the blog. (If anyone is a blog guru and can explain "Feeds" and "Feed Burners" to me, I'd be so appreciative!) Until then, you are encouraged to check back often.
For those who are sketchy about all the details of this adventure or just want to relive it, I will do my best to bring you up to speed. There is quite a bit of detail here, so settle in! Consider it the diary of events thus far.
In late May, Karen had a very thorough breast exam at her annual exam and the physician did not find anything unusual. About four weeks later, Karen found a lump in her left breast while getting dressed in the morning. She made an appointment with her primary physician, Dr. Amy Gilbert, to have it checked but did not feel it was anything to be worried about. Dr. Gilbert agreed, but recommended a mammogram, an ultra sound and a biopsy to figure out what it was.
On Tuesday, June 26th, Karen went to St. Paul Radiology for the mammogram, ultrasound and biopsy. The radiologist said he believed the lump was cancerous which was, of course, a real shock. While the biopsy was being set up Karen called me to come to the appointment so I could be there to hear what the radiologist's thoughts were.
The radiologist told us that Dr. Gilbert would have the results of the biopsy two days later and he suggested scheduling a consultation with a surgeon in the mean time. By the time we made it out to the parking lot and call for an appointment to receive the results from Dr. Gilbert, the radiologist had already called her to inform her of his findings and his suspicion that it was cancer.
There was a lot of anxiety following the announcement and a lot of unanswered questions. Karen, however, decided because of what the radiologist said and how he said it, and what her doctor said and how she said it, that rather than waiting for results that she was simply waiting for confirmation of the cancer diagnosis and began what is an amazing effort on her part to remain positive and focus on the good.
Dr. Gilbert called on Thursday with the results and from the pathology report. As expected, the biopsy confirmed breast cancer; specifically, an Infiltrating Ductal Carcinoma or IDC. Additionally, the report stated that the tumor is estrogen and progesterone negative, meaning these hormones do not cause it to grow. (If it were hormone positive, then a woman can take hormone blocking drugs to lower the chance of a recurrence.) Not all the necessary tests could be performed locally and the pathology sample was sent to Mayo for HER-2/neu testing.
HER-2/neu is a growth-promoting protein and it is found that between 15-25% of breast cancers have too much of this protein and too many copies of the gene responsible for producing HER-2/neu. These cancers tend to grow and spread more rapidly than other breast cancers. Certain drugs and chemotherapies respond especially well to HER-2/neu positive cancers. We would learn later that Karen’s tumor is HER-2/neu negative.
Breast cancer cells are classified by where the cells originate – either lobular (in the milk producing glands) or ductal (in the milk delivering vessels leading from the lobes). They are also distinguished by whether they are contained (called in situ) or have broken through the duct wall and spread to the surrounding fatty tissue and invaded additional cells (called infiltrating or invasive). Almost 80% of all diagnosed breast cancers are infiltrating ductal carcinomas.
The stage of the cancer is determined using a TNM staging system that evaluates whether the cancer is invasive or in situ, the tumor size (T category), lymph node involvement (N category) and whether the cancer has metastasized (M category) in any distant tissue or organ. Once the criterion for each of these categories is known, the physician can determine the stage from 0-IV. Within stages II and III, there are subgroups as well, noted by A, B and in stage III, even a C. Determining the stage allows the patient and physician to make the best choices for treatment.
One week from the day of her mammogram, Karen, Mom, Dad, Karen’s friend Maria and I went for a consultation with Dr. Diane Ogren, the surgeon recommended by the radiologist and Dr. Gilbert. (Karen believes she is the same surgeon who performed her gall bladder surgery several years ago.) Dr. Ogren was very helpful and understanding in answering all the questions of the five of us had. Maria, whose family has a history of breast cancer, was able to ask questions that the rest of us were not aware needed to be asked.
Dr. Ogren ordered a breast-specific MRI that would be used in conjunction with ultrasound during the surgery to locate the tumor.The results of the MRI provided a more complete picture of the tumor and Dr. Ogren stated that rather than the original size estimate of 3cm, it was now believed to be 5cm. This was rather alarming as we were told that a tumor of that size might not allow for a lumpectomy, which Karen desired. Dr. Ogren stated that she could attempt a lumpectomy, but if the margins (the allowance of healthy cells around the tumor that are removed as a well) were too large that a mastectomy would be necessary. After a short period of recuperation from the surgery, she said Karen would go to an oncologist to begin chemotherapy.
Karen felt very comfortable with proceeding with Dr. Ogren and scheduled the surgery for two weeks later. Some of us were not so assured and wanted Karen to get a second opinion. Personally, I was concerned that a general surgeon would not have the most current training and knowledge of advancements in breast cancer surgery. When asked how it is known that all the tumor has been removed, Dr. Ogren’s answer was that she went by feel. This troubled me as cells are too small to be felt. I wanted a more definitive answer. Also, where I had heard/read that it was possible to do a mastectomy and retain the nipple and aureola; we were only presented with the two standard options of a lumpectomy or a mastectomy. I also was not enthused by the compartmentalized care it sounded like she would be receiving (surgery, handed off to oncology, handed off to radiology – all physicians at different facilities). From what I had read about the Mayo Clinic and the University of Minnesota Breast Cancer Center, they approach the issue as a team, no treatment/surgery is performed if the team is not in agreement and the patient is the key player on that team.
The breast-specific MRI ordered by Dr. Ogren was performed in St. Paul. She called with the results on Monday, 7/2, and confirmed it was still breast cancer and gave a estimation of the tumor size as 5cm. Also in the MRI it was noticed that the nodes under the left arm looked 'suspicious'.
Unbeknownst to the rest of us, Karen’s co-worker and dear friend, Tom, had encouraged her the day before the surgery consultation to make an appointment at the Mayo Clinic for a second opinion. He had taken his partner there when he had bladder cancer just a few years back and spoke so highly of the coordinated care offered there. After some consideration, Karen decided to keep the appointment at the Mayo and postpone the surgery scheduled here in town. Mom, Dad and I were thrilled and relieved.
On Tuesday, July 10th, we all drove to Rochester for Karen's 6:45 a.m. consultation check-in at the Mayo Clinic. We met with Dr. Connie Williams who performed an exam and took a history. She asked Karen for her thoughts and was very attentive and reassuring. She told us the results of the HER-2/neu testing (negative) and also arranged for some additional bloodwork to be done. She ordered a breast ultrasound and a fine needle aspiration of the lymph nodes to be done that day as well. Additionally, a "marker" was placed through a fine needle into the tumor so that it would appear on future imaging and track the tumor. When Karen saw on the ultrasound that the "marker" is actually a tiny, tiny highly recognizable icon, she joked, "What a minute. You put a breast cancer ribbon on my breast cancer?" Dr. Williams came back with, "I know. We get you all fancied up and no one can see it." It was great to have the doctor understand and appreciate Karen's sense of humor and already be comfortable enough to enjoy it herself.
Dr. Williams noticed that Karen was scheduled to meet with the Chief Resident for her surgery consultation and said that while he/she was a competent surgeon, she would recommend that we see a staff surgeon instead. She made arrangements for us to meet with Dr. Judy Boughey, a surgeon who specializes in breast surgery.
Karen wanted to explore having chemotherapy before surgery (called neo-adjuvant therapy) because she believes that once the tumor is removed, it is not possible to see if the chemotherapy is actually having an effect on the cancer cells. Dr. Williams noted that in doing chemo first, the tumor can shrink (on average 70% and sometimes completely which is why the marker is helpful) and reduce the amount of tissue that must be removed with the lumpectomy. She felt this was a viable option for Karen and arranged for us to meet with the oncologist, Dr. Prema Peethambaram.
Dr. Peethambaram was just as kind, respectful and reassuring as Dr. Williams. We have come to learn that this is the standard of care at the Mayo. The patient is the center of all the decisions that are made and the difference is notable. It occurred to me late in the day that none of the physicians we saw wore a white coat. I believe this really breaks down the stereotype of the doctor as having a special status above the patient. It was refreshing.
Dr. P stated that the survival rates for chemo/surgery/radiation were about equal to those for a mastectomy and that the choice belonged to Karen. Karen is firmly in favor of a lumpectomy and Dr. P said that she believed that neo-adjuvant therapy was the most prudent option then. She offered Karen the option to start chemotherapy that very afternoon, but Karen felt that was too big a step and wanted to wait the weekend. In her words, "You never imagine yourself saying, 'Yes, I would like to start with the chemotherapy, please.' but there it is!"
Karen will be receiving 4 cycles of Adriamycin and Cytoxan every other week (provided her blood cell counts are good). Following this, she will receive a 4 cycle dosing of Taxol every other week. Karen is imagining the chemo as piranhas being sent in to eat all the cancer until nothing remains. I love this image!
Finally, we met with Dr. Judy Boughey, the surgeon suggested by Dr. Williams, to discuss surgery options. We are thrilled to have Dr. Boughey on Karen's team as she specializes in breast surgeries. She completed a year long fellowship at MD Anderson Cancer Center in Texas focusing specifically on breast cancer and breast reconstruction. Dr. Boughey said that the result of the ultrasound that day shows the tumor to be just under 4cm, in fact, and she did not feel it would likely be problematic to perform a lumpectomy. We like this answer much better. Karen will check back in with Dr. Boughey toward the end of chemotherapy.
It was a very long day at the Mayo, but it was very fruitful. Karen decided that she really liked the team approach to her care, how everything she needed was right there in the same building, how they arrange for all of your appointments with the various physicians and departments/labs and as she said 'how the right hand knows what the left hand is doing.' We feel very confident that Karen is in the best hands with these physicians. After all, we are not interested in a measly 5 year cure rates. We intend to do everything possible as best we can and know we are focusing on the long-term 50 year cure rates.
On Monday, July 16, 2007, Karen, Mom, Dad and I drive to Rochester for Karen’s first chemotherapy treatment. Karen met her Pink Ribbon Mentor, Fay, a volunteer who has also undergone breast cancer treatment. She gave Karen a tour of the chemo wing and described what would happen during the treatments. (Fay also called Karen a week later just to check and see how she was doing!) As for the chemotherapy, Karen received two drugs intravenously, Adriamycin and Cytoxan. Because of the cost of these treatments, the pharmacy will not mix the drugs until the patient is sitting in the unit being given saline. Prior to receiving the chemo, she is given a big load of steroids and anti-nausea drugs as a prophylactic.
During the Adriamycin 'push' we learn that this drug is so vicious that it cannot touch the skin or any other tissue other than the vein. Karen is given a Popsicle or ice chips to suck on while she is receiving the push as studies have found that having the mouth cold when receiving the chemo lowers the chance for mouth sores as a side-effect. A study was also done to determine if the use of cold would hinder the loss of hair. The nurse told us that during the trial they had women with ice packs on their heads, shivering (the chemo drip is cold as well) and in the end it delayed the loss of their hair only by four days on average. Poor gals.
After the treatment was done (it takes about an hour), we checked into the hotel and went for a wonderful meal at Prescott’s. The service was fantastic, the food was wonderful and for dessert we share the most incredible Baked Alaska. It was just the kind of relaxing time we all needed after such a tense day. However, as we did not know what to expect that evening was rather anxiety-filled . Karen had decided and told herself that she was not going to be sick. However, she laughed and said that her pragmatic side said ‘But if you did get sick wouldn't it be nice to have a bucket by the bed and not have to run to the loo?' So in spite of being certain she wouldn't get sick, the garbage can was tucked beside the bed... and not used.
Twenty-four hours after the chemo, we returned to the clinic and Karen received an injection of Neulasta to help maintain her white blood cell count. We attended educational classes provided by the Mayo on 'What to Expect During Chemotherapy' and also looked at wigs. Karen had decided that with the aid of positive thinking she was not going to lose her hair; but, again, that damn practical side said ‘But if you did happen to lose your hair wouldn’t it nice to have already looked at some wigs?’
Karen is sent home with drugs to ward off nausea. She is to take more steroids every day for four days and is given Compazine to take as needed. On the whole, Karen does remarkably well with tolerating the chemo. She has a few small mouth sores and a bit of nausea, but finds that eating small meals throughout the day help to keep it in check.
The most annoying side effect comes from having to take the steroids. Now all she talks about is her performance and how much better her rbi stats are going to be. They advised her not to take them after 4:00 pm, but even at that, Karen found it revs her up and makes it difficult to fall asleep and stay asleep. When you've got a game to win, that's all you think about.
Ten days after the chemo treatment, Karen says that she finally feels like herself again. Four days later, we are headed back to Rochester for her second treatment. On the drive down, Karen had about ten strands of hair come out at once. “Oh, that can’t be good!” she laughed. (Later that afternoon as a nurse administered the IV push, she told us that with the drugs and the dosages Karen is taking that she will lose her hair. Apparently the power of positive thinking only goes so far in some instances. There are some chemo treatments with which people do not lose their hair, but with these particular drugs, everyone does.)
The morning is started with a blood draw and then a visit with Dr. Peethambaram. Again, Dr. P does a wonderful job of patiently answering all our questions and addressing our concerns. We are a logical science family and have a lot of questions. I asked how the chemotherapy knows which are the fast dividing cells to target and which are not? She explained that the chemo goes into every cell in the body. A typical, healthy cell will filter the chemo with little issue, but something in the fast growing cells does not allow the chemo to be processed. This interrupts its cell division and as a result, it dies. The cells of the mouth, stomach and hair follicles are also fast dividing, so they will react as well.
The most exciting news of the day though came during Dr. P’s exam. She said that all of Karen's bloodwork numbers were good (i.e. within normal range). Then she palpated the tumor and asked, "Where is it? It is more a thickening now than a lump." We couldn't believe what we heard and are thrilled that the piranhas are working so well so soon! It made losing hair a bit more bearable knowing the results are being shown so quickly. We returned the next day to attend a class on "Nutrition During and After Cancer Treatment" and so Karen could receive the Neulasta injection. We looked at wigs again, but decided to do a bit more looking for the right one.
By Wednesday morning, Karen's hair was coming out in large clumps and so we broke out her vintage hats! A couple days later, Karen's friends Mark and Shirley gave her a wonderful gift of some headwraps and caps. It was perfect timing as she is definitely sporting chemo hair.
Other side effects are still very manageable, some nausea and reflux has developed. A quick call to the Mayo, where they stressed 'Don't suffer through the side-effects. We can help with those,' and they provided some relief from the heartburn with the wonder drug Prilosec. She has also noticed some strange sensations in her body and she has had a couple of instances with her memory not being what it used to be (what is referred to as “chemo brain”).
Her third chemo treatment will be on Monday, August 13, 2007. Karen has also requested appointment with Dr. Boughey that day to discuss surgery options further. She feels strongly about wanting to keep as many of her lymph nodes as possible as they are key part of the body’s immune system. She believes that if, after the chemo, a biopsy of the ‘suspicious’ nodes still shows cancer in the nodes, then we wait with surgery and do more chemo. After all, if the chemo goes into every cell, shouldn’t it be able to kill all the cancer cells that are in the nodes? It seems reasonable. But, we have found that a lot of logical suppositions about cancer treatment just don’t follow, so this may or may not be something Dr. Boughey is willing to consider. However, Karen just wants her to think about options for being conservative with the nodes.
Well, this should bring you up to date. Karen and I will do our best to keep the blog current for you. I am working on trying to set it up to allow you to subscribe to the blog and then receive email notice automatically whenever anything new is posted.
Good things to you,
Janis
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