Hair Today, Gone Tomorrow

Meal Coordination

Tammy has graciously volunteered to coordinate meals for Susie over the course of her Chemo treatments. If you can help out, please contact her at allenandtammyalbright @ adelphia dot net. Of course you will need to remove the extra spaces and format this appropriately for email (trying to keep her from getting spammed from web crawlers). Please email her with your phone number and what day(s) you can bring what meal(s).

Many thanks to Tammy for her help!

First Chemo Day

Yesterday Susie had her first Chemo treatment. She was surrounded by friends and we brought chocolate. (I think that is why she invited us!) She got to the clinic around 1:30, and after much poking and prodding, they managed to get a line into her vein (3rd try is a charm) at around 3:30 to draw blood. After they ran some tests, they began her chemo treatment at about 4:30. First the Adriamycin is pushed in through a large syringe slowly. It is bright red, and she was told it would make her pee red.
After that, the Taxotere drip was started. About 5 minutes in, she said, "I am feeling short of breath," and turned quite the bright shade of red. I called in the doctor, and they stopped that drip. She was having an allergic reaction. She was seeing silver spots "like when the sun hits the dust specks" and sweating pretty profusely for someone who is always so cold. They gave her some Benadryl, Zantac, and Decadron (Dexamethasone) for the reaction, plus some additional saline. After 10 minutes, they started up the Taxotere drip again at a much slower pace, and slowly ramped it up to full speed. She was done at about 6:30. And her pee was already red!

We took her home, had a bit of dinner, and she went to bed. I am sure she was exhausted, I know we all were, and we didn't have to get poked, prodded, and poisoned!

She probably will feel very fatigued over the next few days, and may be sick. So while I know she appreciates all of your calls and emails, she may or may not be able to respond in any timely manner. But know that she knows you are there and that you care, and she will try to get back to you as soon as she feels up for it!

(Not So) Random Acts of Kindness

One of the things that has been amazing is how kind and caring people are when they hear Susie has cancer. Now, you should also know that it has worked to her advantage in cases like with her landlord that hasnt exactly been responsive to her needs over the last 8 years, but now is practically falling over himself to get things done that she needs! But there are also others out there who are just being kind. We will use this post to recognize those people, and encourage you to go to these businesses if you have the need in the future.

Susie's Hairstylist, who she has been going to for 10 years, recently gave her a haircut, but didn't charge her because she said "how can I charge you for a haircut you will only have for 2 weeks?" Normally $75, Susie got this cute haircut for free.


Susie was shopping in the outlets last weekend and saw a woman wearing a shawl that she admired. When she asked where she got it, this woman, Grace, explained that she actually imported and sold them herself. And as it turns out, she lives in the Marina. So Susie was going to purchase a shawl from her for $99, but Grace decided to give it to her instead. Grace's primary business is as an International Travel Consultant, but she also imports Pashmina silk and cashmere scarves, as well as other items and can be reached at gracegerales @ hotmail dot com.

Jamie has a co-worker that Susie met a couple weeks ago when they went to his office holiday party. He sent her a beautiful bouquet of roses. Many thanks.

We will try to post others as they occur. Thanks to all.

One More Wig

What about this one?

Which Wig Will We Wear?

Alliterations Aside, I think we need some votes.... Tell us what you think! Leave a comment!

Wig #1

Wig #2

Wig #3

Wig #3a

Wig #4
Wig #4a

Wig #5 Wig #6
Wig #7

All That is Interesting, But How is Susie Doing?

Happy to report that Susie is doing well overall. Her spirits are good, she is off the pain pills, sleeping well and generally bored with the being at home, which is always a good sign of a speedy recovery! ;-)

I know she has been enjoying the visits, so please keep calling and coming by... bonus points to anyone who can find us some of the breast cancer awareness bags of pink M&Ms. Haven't been able to find them since the end of October which is breast cancer awareness month.

Looking forward to seeing you all soon!

Good News, Bad News

Susie's surgeon just called with the pathology report. The good news is that of the 20-30 lymph nodes that were removed, only the sentinel node itself had cancer cells. One other had a few cells, but they still consider that negative.

The bad news is that the margins were not completely clean on the side where the tumor came in contact with her skin, so next week Susie will have to have a 20-minute procedure to remove some additional skin from the area, just to make sure all the tumor cells are removed.

This all means that Susie's cancer is Stage IIA.

The other good news to all this is that she can likely have a lighter regiment of chemo.

Will add more info as we get it...

Back at Home

We are back at Susie's now. We had some wonderful dinner, thanks to Julie and Mark, and are now just relaxing a bit before everyone heads off to sleep. It was a long, hard day for everyone, but of course especially for Susie. I know I can speak for her when I say thank you for all of your phone calls and wishes. It means a lot to her.

Over the next few days, go ahead and call Jamie, Janeen or Sarah and we can give you the up to the minute visitation schedule. I know Susie would love the visitors, but she isn't as able to run for the phone, so we will make sure that she knows you want to come.

Thank you again, and know you can post comments here for Susie to read. She will likely not be typing anytime soon, but we will still try to keep you all posted as to her progress.

Much love to all.

Post-Op

4:15 pm
The doctor just came out and spoke with us. They removed the tumor, it was up against the fascia layer, and into the skin a bit, so they took some of that. She did have node involvement, so they did remove all of the nodes. The pathology report should be available by next Tuesday or Wednesday to let us know if she is stage II or stage III.

She will have a drain in for about the next week, and when the fluid is less then one ounce a day, she will go back to her surgeon to have it removed.

Susie will need chemotherapy, then radiation, then hormone treatment. She will need to work very closely with her doctors to address her specific concerns regarding fertility and childbearing, but they are all aware of these concerns and will do their best to work out the best treatment plan for her.

As far as recovery, she will need to see how she is feeling before she decides when she can go back to work. However, as long as the drains are in, she will not be able to get the area wet, so Nurse Jamie will provide sponge baths and hairdressers Janeen and Sarah will be on hair washing and styling duty. She is advised to use her hand and arm, but she will likely have some numbness in her tricep area for possibly up to a year. Also, she won’t really be able to lift the right arm higher then her shoulder until the drains come out and the area heals.

4:35 pm
We just saw Susie, she looks good, but she says her arm hurts, which is to be expected. We hope that she will be feeling well enough in a couple hours to take her home.

Feel free to give any of our cell phones a call and we can give you status later as well.

Thank you again to all of the well wishes and prayers. It means so much to Susie and her family.

Surgery Day

Susie checked into the hospital at 9:45 this morning. The nurse came in at about 10:15 and hooked up susie’s IV. At 10:30 David came in to take her down to Nuclear Medicine. David is basically a taxi cab for the wheelchair set. In Nuclear Medicine, the doctor injected the tumor with a radioactive isotope to see where the cells were flowing. In the x-ray type thingy, you can clearly see the tumor and the sentinel node (as well as a secondary and tertiary node) that the material has flowed into.

We came back up to the room at about 11:30 and we are now waiting until 1:30 for the surgery.

It is now noon and she is still complaining about her hand. Not the pain in her breast or her other arm, but her hand. Hysterical.

More to come later when I get internet again.

Thank you for your prayers and well-wishes.

Surgery Prep Q & A

Susie explained to me what she discussed with her surgeon today:

I am having a sentinel node biopsy. The first thing that will happen is that I will have the sentinel node dissection, since it is less invasive. If it tests clear (negative) for cancer cells, then none of nodes will be removed. If they are not clear (positive), then they will move on to an axillary lymph node dissection, which is where they take all the fatty tissue including the lymph nodes in the area, and send that to the pathologist. He then removes the lymph nodes from that tissue and evaluates it to determine how many have cancer and what the extent of the cancer is. This is considered the appropriate procedure for earlier stage cancers like mine. It covers level 1 and level 2, where level 1 is the lowest (includes the edge of the pectoralis minor muscles), and level 2 is mid level (includes the tissue under the pectoralis minor muscle). Level 3 is if it has metastasised to the muscle, and includes the tissue up to the neck.

If she has any sign of cancer cells in the lymph nodes, then level 1 and 2 is what she will have.

If she has this done, drains will be implanted and will stay in for 7-10 days. The drains will need to be emptied when they fill. When the lymph fluid collecting in the drains is less then 1 oz a day, the drains are ready to come out.

She has a small risk of lymphedema (5-10%) following surgery, but that risk increases with chemo and radiation to 25%.

These are the questions that Susie asked her doctor this afternoon in preparation for the surgery:

Q: How many sentinel node biopsies have you done?
A: A lot

Q: What percentage of the time have you found the sentinel node? (Average is 85-95% of the time)
A: 98% Because I use 2 techniques to find the sentinel node: 1) I inject a radioactive isotope, and use a radioactive probe during surgery to tell me where the material is, and 2) a blue dye is injected during the surgery and is visible as it travels to the sentinel node.

Q: What is your false negative rate? (Should be below 5%)
A: 5-7%

Q: When will I have the results?
A: Tuesday or Wednesday

The Oncologist will then do additional tests to figure out what stage she is in.

Radiation Oncologist (Radiation Therapy)

Today Susie met with the Radiation Oncologist to discuss what will happen after the surgery.

After additional tests are done following the surgery to determine if there is lymphatic invasion, it will be determined if chemotherapy will be done. If so, that will happen first, then radiation therapy will follow.

The radiation oncologist will tattoo pin marks on the area to be treated with blue or red dye. This will allow them to target the location on the chest each time they administer radiation.

Susie will go in for treatment 5 days a week for 7 weeks in the doctor's office. Each appointment will be about 10 minutes total time, where only 1 minute is the actual treatment. This could be longer, depending on whether or not the nodes are positive.

The whole breast will be radiated roughly 28 treatments, and 7-8 treatments will be just on the localized area where the tumor was removed.

Every Monday, she will meet with oncologist for updates and discussion of progress for about 30 minutes.

The first appointment will be about 1.5 hours, after surgery, to review the pathology report from the surgery. At that point, the radiation can be set up, and then she will go for a CAT scan to check her lungs, heart, and general chest wall area for signs of cancer cells.

The radiation will slightly hit the bottom of the right lung, which will show up on future diagnostic tests, but will clear up eventually.

The skin on her breast will be irritated, not like a 3rd degree burn, but it will be red and can be treated with Lubriderm and aloe vera to keep the area well hydrated, and she will need to wear sunscreen every day and drink lots of water.

For the course of the radiation, she is not allowed to shave or use deodorant. On the upside, if she completes chemo prior to this, she won't have any hair to shave there anyway, so that shouldn't cause too much trouble. Just don't make her sweat! :-)

The radiation will have a tendency to lighten the scars, not darken them, so that is another bit of good news.

She needs to find out if she can apply ice packs to the areas if they get irritated.

Medical Oncologist (Chemotherapy)

We met with the Medical Oncologist today. Here is what we discussed, from Susie's current diagnosis and status, to her surgery and follow-up treatment options.

Pathology Review:

Bloom Richardson score (aka Bloom Scarff Richardson Score) was established to introduce uniformity to the field of cancer research and is based on 3 factors:

• The purpose of the cells in the breast is to form ducts for the milk to be delivered. If the tumor cells continue to form little ducts and tubes, that means that it still remembers what it was originally there to do, and is considered “well behaved”. In aggressive tumors, they may not continue to form ducts; they don’t remember they are breast cells. Well behaved cells are given a score of 1, aggressive cells are scored 3.
• The nuclei are examined for conformity of shape and size. A score of 1 is given to very similar cells, 3 is given to cells of varying shapes/ sizes
• The number of cells dividing (mitosis) is examined to determine how fast the cancer is spreading. A score of 1 is given for slow and a score of 3 for high.

If the total is 3, 4, or 5, the cancer is given a grade 1 and is considered well-differentiated from the surrounding cells.

If the total is 6 or 7, the cancer is given a grade 2

If the total is 8 or 9, the cancer is given a grade of 3 and is considered poorly differentiated from the surrounding cells.

Susie’s score on the above items are as follows:
3
2
1
For a total of 6 and a grade of 2

From the original biopsy and blood work, lymphovascular invasion was initially not identified. This means that they could not determine if the cancer had spread to the blood supply. Upon more tests, it was determined that the cells were moving into the bloodstream. As a result of that determination, a fine needle aspiration (FNA) of the lymph nodes was recommended, and that showed that there was a small lymphatic invasion present (small lymphocytes) and foamy histiocytes. That means that even thought it was not yet in the lymph nodes, it could be on its way. A sentinel node biopsy is recommended for further determination. This is done as part of the surgery. Prior to surgery, a blue dye will be injected into the tumor, and during the surgery, any lymph nodes that turn blue from the dye (meaning that the cancer cells are flowing into them) will be removed and examined.

This tumor likely started as a Ductal Carcinoma in Situ (DCIS), and then became a bit more invasive.

Susie has a number of factors that give her more treatment options:

Her hormone receptors for both estrogen and progesterone were both positive, which means that the tumor likes these hormones (considered well-behaving). By taking a drug (Tamoxifen) that inhibits production of these hormones, she can decrease the chances of a recurrence. Additionally, she is Her2 negative, which means that she has a less aggressive tumor. Another method to fight the cells back and decrease her chances of a recurrence is Chemotherapy (chemo).

Treatment Options:

If the lymph nodes are positive for invasion, then chemo would be recommended. There are several different options to consider when choosing a chemo therapy treatment. In Susie’s case, where the possibility of having children in the future is most important, she would likely be given a combination of Adriamycin and Taxotere, because it is least likely to cause infertility. Cytoxan is commonly prescribed in older women for whom having children in the future is not a factor in determining their treatment choices. This will not be given to Susie.

The chemo treatments would likely be 4 courses in 3 week rounds for a total of 12 weeks of chemo. In the beginning she might feel okay, and may continue to work if she feels up to it. However, towards the middle to end is when she will not really feel as good. She will lose her hair and whatever appetite she has. This is where everyone of you will be able to play a great part in keeping her fed and her spirits up. If this is a bridge we will need to cross, then we will let you know how you can help… we will need all we can get.

If the lymph nodes prove to be negative for invasion, there is another relatively new test (in use about a year and a half) that can also be performed on the tumor to determine best course of treatment and survival statistics. First, a quick history lesson: about 20 years ago, a study of women with breast cancer who had similar characteristics as Susie (progesterone/ estrogen receptors positive, Her 2 negative) were given either Tamoxifen or a placebo for 5 years. The Tamoxifen group had significantly less recurrence then the placebo group. They kept all of the tumor samples, and tracked those patients. And now, 20 years later, they know what has happened to those women, what their recurrence and survival rates are. And they can compare 23 various genes in those cancer cells to the cells in Susie’s tumor to look for correlating gene patterns.

If they find similarities between Susie’s cells and some of those from the study, they can look at the person who it belonged to and based on that persons’ recurrence and survival patterns, can estimate within stricter tolerances likelihood for recurrence in Susie. Based on this information, Susie can decide if Tamoxifen alone is sufficient, or if adding a chemo treatment would significantly decrease chances of recurrence and increase chances of long term survival.

This study is called Oncotype DX. It was conducted by the National Surgical Adjuvant Breast Project (NSABP) out of Pittsburgh as part of their cooperative cancer trials, and the study was published in the New England Journal of Medicine in 1989.

More information on Oncotype DX.

Information on Breast Cancer Prevention.

Now the big question: children. Once the tumor is removed, the lymph nodes are tested, and a course of action is chosen, it seems very likely that she will still be able to have children. Her treatment will likely require her staying on the Tamoxifen at least a year after completing her course of chemo and radiation, but then she would be able to go off it for a few months and attempt to get pregnant. Once she has the baby, she would need to go back on the Tamoxifen to finish up the 5 year course of treatment (with possibly another break for another baby).

Initial Diagnosis

When Susie discovered the lump in her right breast, she acted immediately and made an appointment to have a mammogram and ultrasound. Even though the lump was plainly obvious not only to the lightest touch, but even to the eye, the mammogram did not detect it. A needle biopsy was done, and it was determined that the lump was indeed cancerous. She was told on Friday, October 13th. We have decided to become superstitious.

I think she has spent this entire first week reading everything on the Internet she could find, in addition to several books, including the ones in the list to the right. I think that we have probably all been doing the same. I also know that finding information targeted to women under 40 has been challenging at best. That fact is causing us to consider the possibility of recording this experience and creating a documentary about women under 40 surviving breast cancer. Thoughts?

We decided that something like this will help us all to keep information from appointments to the questions and answers in one place so that we can all update it for ourselves to use. But this will also serve as a way to communicate to all of those people who care so much for Susie to keep up on the latest information and status of treatment. Additionally, we will post feelings and experiences here as well, because we believe that opening up about how this is affecting everyone, not just Susie, will help us all cope and support Susie in the best way we know how... through love.

We request and encourage you to post comments, thoughts, feelings, and your prayers here as well... we will be reading this blog as much as we will be posting to it, and it is meant to be a communication conduit for all.