When cancer spreads outside the initial area, scans can show a lot of where it has spread to, but if it is spreading a little, then it is also likely to be anywhere in the body, just in smaller amounts. Instead of treating a certain spot like the breast (by surgery and radiation) you have to treat the whole body (this is called systemic treatment...as in your whole system). When I had stage 3 cancer, chemo was a systemic treatment to treat any possible cancer floating around that we couldn't see on a scan. After all those main treatments were done, I started taking Tamoxifen (an estrogen receptor modulator), and stayed on it from April 2009 until my recurrence in early 2017 (with a year long break to have Brinkley). So even though it wasn't a majorly difficult treatment, I was continuing to be treated throughout that time period.
Sometimes people do have surgery to have parts of cancer removed in stage 4, but that's mainly as a symptom reduction rather than a cure or treatment. Since my cancer is slow growing, trying to remove the lymph nodes we know about wouldn't really do enough because I probably have tiny spots who knows where. Aside from that, the location of my lymph nodes with cancer would be hard to remove and again, it wouldn't change the fact that there's still tiny cancer around somewhere that we need to treat. The treatment for the little cancer and the tumors in the lymph nodes are the same, so that's the treatment we do.
Treatment for my type of stage 4 breast cancer follows a pattern in general, based on where the spread is and what other medicines have been tried. But generally speaking, the first treatment is Letrozole. More recently, they found that adding Ibrance makes the Letrozole work better, so now, the first treatment is Ibrance + Letrozole. (There are similar meds to both of those that can be chosen as well, but generally a kinase inhibitor and an aromatase inhibitor together are the first line of treatment for this type of MBC.)
The next two choices for treatments are usually Faslodex, Afinitor, and Arimidex. For me, the second treatment is going to be Faslodex (an estrogen receptor downregulator). Third will be Afinitor (another kinase inhibitor) plus Arimidex (another type of aromatase inhibitor).
How do you know when to switch treatments? When one stops working, you go down the list to the next one. People and their cancers have different reactions to different meds and dosages, so no way to know in advance how long you'll be on one. I started Ibrance + Letrozole in May of 2017. At that time, we knew that I had some small cancer spots in the lymph nodes in the middle of my chest and near my shoulder/clavicle area. Eventually, after later scans, we found out that I had at some time had a small spot of cancer in my spine (sometimes they don't show up until the scar AFTER healing). I also felt a lump in my neck and that was also a lymph node tumor. Therefore, the Ibrance + Letrozole got rid of the spots in the middle of my chest, got rid of a previously undetectable spot on my spine, and was keeping my neck and clavicle spots stable (even a small amount of shrinking at one point).
A few months ago is when the neck/clavicle spots started hurting a bit (not too badly, just kind of like a pulled muscle feeling) and I could feel them a little more. Scans showed a tiny bit of growing. Doc was debating on keeping me on the Ibrance + Letrozole OR going on to the next medicine, Faslodex. Since the growth was so small and slow, he decided to wait and let my new Doc change me over if needed once I got down here to my new job.
So now, new Doc says yes, the Ibrance + Letrozole is no longer doing its job (because the spots are not staying the same/stable nor are the shrinking). Therefore, time to go to the next treatment in line.
I know this is a lot of info but I keep getting asked questions so I thought I'd try to explain it better for anyone who wanted to know!
Faslodex will be a once a month injection (shots shots shots!). ;) Except they load you up a bit the first month, so the first dose will happen, the second one will be 2 weeks later, the third one 2 weeks after that, and then once a month. It will be done at the doctor's office, and I'll just get my regular check up with blood work and check-in with doc at the same visit each month.
What side effects will I have? Well, that varies between people just like the other treatments so not sure yet. Most common is nausea (which I take medicine for already most every day, so I'm not really worried about that one). Some people have other side effects like trouble at the injection site (usually frail/small people....give me all the tacos!), gastro issues (unfortunately I'm all too familiar with those), bone pain, fatigue, hot flashes and some other possible minor things. Nothing crazy like IV Chemo, and as long as the bone pain stays minimal, I think I'll be able to handle this treatment just as well as the last treatment.
But....I'm still excited to have a week or two off of the cancer treatment! :)
When will I start? Well, I am going to have a bone scan first, to make sure I still don't have any visible bone mets, but mostly to just have a baseline for future comparisons. And I just got the notice that they scheduled the bone scan on next Thursday...which just happens to be my 38th birthday. Fitting, since I was 28 at my first breast cancer diagnosis. :) I imagine I'll go back the following week to start the Faslodex.
Feel free to ask any other questions you have!
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