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.