While I do not yet have specific dates, I do have my new plan for treatment after two trips to Philadelphia. (Yes, two, in a matter of five days…) I thought it would be easiest to break it up by modality in more detail below but first I wanted to mention how wonderful University of Pennsylvania was: Appointments on time. Doctors who listened attentively and spent significant amounts of time with us. Detailed explanations on each step of the game plan. Patient listeners. In total, we spent 3 1/2 hours with 3 separate doctors – my oncology surgeon, my oncologist, and my plastic surgeon. David and I both felt very comfortable with all of the doctors (despite the fact that they all looked too young to be doctors!), and felt a sense of relief and encouragement when we left.
Here are the details of our plan forward…
My surgery will likely be scheduled in mid-to-late January. The surgeon will remove the mass and does not think that the muscle will be impacted, as Invasive Lobular Cancer does not typically attach itself to the muscle. No lymph nodes will be removed since there is no evidence of disease in them. Additionally, because I already have lymphedema, she did not want to risk impairing the use of my arm for merely exploratory reasons.
She agreed that doing revision surgery as part of the excision surgery and submitted the referral to the plastic surgeon while we were meeting with her on Friday morning. By Friday afternoon, I had already heard from the plastic surgeon’s office and was scheduled to meet with him on Christmas Eve (hence, the second trip). The plastic surgeon was understanding of my dissatisfaction with my original surgery and noted lots of extra skin and “dog ears”. (For your edification, dog ear is a term used to describe a characteristic puckering of the skin that can occur after surgical wound closure. These are a common and generally preventable problem, but for some reason, many women have them after mastectomy. I believe that surgeons can be either lazy, or under the false assumption that most women will return for implants, so who cares?)
The oncology surgeon will simply remove the tumor, and then the plastic surgeon will take over, removing the extra skin and performing liposuction to remove the excess tissue/fat within those pockets of skin. He was very clear about setting expectations. It will NOT be perfect, for the following reasons.
- He is fixing someone else’s surgery. It’s always easier and better to do it right the first time.
- It is unclear how much skin the first surgeon will remove, or how deep she may need to go, as part of the tumor removal.
- The right side has been radiated, and radiated skin does not stretch as well, nor does it heal as well.
- Because of my existing lymphedema, he will have to be much less aggressive on the right side, so as not to further damage the lymphatic system.
I was grateful for his honesty and, while it won’t be “perfect”, it will look remarkably better.
Surgery will be done on an out-patient basis and should only take 60-90 minutes! I may possibly have drains in for about a week.
Because my recurrence is the exact same cancer that I had previously, chemotherapy will not be effective. If this had been a new primary cancer, chemo would have been on the table. However, since it’s the same one, these cells have already seen chemo and survived it. The oncologist also expressed that I had received one of the harshest and most toxic combinations of chemo, which is no longer given in the manner I received mine, so if the cells survived that, they surely won’t be impacted by something less than that. I am relieved to not have to do chemo again!
There is such a thing as a lifetime limit on radiation. Generally speaking, once you have played that card, you cannot play it again. However, at UPenn, they do re-radiate if it’s appropriate. So this will be looked at in terms of how much radiation I received previously. If there is any room between what I received previously and the lifetime limit, I may have some radiation. Perhaps it will be at lower doses or fewer sessions, but they will give me what they can and believe there is some benefit in this. I did not meet with a radiologist at Penn, but they said they often work with my local radiologist and he will make the final determination.
This is the part I worry about the most because I struggled with the Femara so much the first time around. As some of you remember, I dealt with insomnia for months on end, had bad night sweats, and was constantly in pain. I could barely move on this drug and felt like I was 100 years old. That said, because my cancer is “highly estrogen positive”, taking anti-estrogen drugs will have benefits in staving off future cancer growth. She explained that, because I was not menopausal at time time I was taking the Femara (or rather newly menopausal), the drop in estrogen was significant and had greater side effects. Now that I have been menopausal for seven years, after being thrust into menopause by chemo, the drop in estrogen will be less and perhaps, the side effects will not be as severe.
She promised not to start me the Femara, though, and we will keep trying until we find one that I can tolerate without loss of quality of life. Options include aromatase inhibitors like Arimidex or Aromasin, Faslodex (a very painful shot in the butt!), Exemestane, or even Tamoxifen (normally given to pre-menopausal women, but better than nothing). Ibrance is a drug approved for metastatic breast cancer (you’ve all seen the commercials) and that’s in our back pocket, if needed. While I am not technically “metastatic”, the local recurrence could be seen as such if we needed to go that route.
This treatment will start after any radiation. The goal is to get me to power through five years of this type of systemic therapy.
My case will be reviewed by the UPenn “Tumor Board” in coming weeks. They are a brain trust, of sorts, with all their Breast Cancer team experts (oncologists, surgeons, radiologists, pathologists, etc.) reviewing cases. If anyone comes up with any different thoughts than what is presented above, they will let me know.
I was impressed that they reviewed every little thing that was on my tests. Thinning of uterus lining, so let’s do a non-urgent transvaginal ultrasound in the future. Scattered bone foci (also referred to as bone islands) that they don’t see as concerning. Possible diverticulitis or epiploic appendagitis. Nothing to treat with that, but awareness that it’s there. They were just so very thorough, with all my tests and pathology slides being reviewed by all the respective experts on their team.
I am glad to be going to Penn for my treatment. I feel as comfortable as I can about the game plan, and I’m actually very happy about being able to get the revision surgery done as part of this. I know David felt more comfortable after meeting with everyone and, of course, we were happy to hear the word “curable”.
For now, I’m just waiting for my surgery date and enjoying the holidays!
As always, thank you, all, for your support and encouragement.
IMDb: The New Plan (2018)