Take a moment to describe how you or your loved one currently manage this condition, including any medical treatments. How did you or your loved one and doctor decide on this approach?
I have only followup appointments now that I’m past the five year stage. I was lucky because they found my cancer at a very early stage. I didn’t need chemo, only radiation. I only have to be careful about soy products and other things that have estrogen. We decided on a partial mastectomy as the best course of action.
I spoke to two different doctors and they both recommended chemotherapy, which I have been going through. And I also had a double mastectomy. I still have about six or eight treatments of chemo. And then we go from there to see what our next step is. Like I mentioned, I talked to two different doctors and they came up with the same treatment plan. So, that’s what I decided to go with.
I am already finished with chemo with proton radiation and with my ongoing infusions that were maintenance infusions for the type of cancer that I had. The only treatment that I’m still getting is a anti estrogen pill and an anti estrogen shot. So those have both put me into forced menopause for five years. I think it also asked how those things are decided. So… Oh, and surgery. I had a single mastectomy without reconstruction. So all of those things, I was very much involved with the decision making, but all of my doctors gave me a lot of research to show like, “Here’s the results of survival if you have a single mastectomy versus a lumpectomy,” which really wasn’t even an option for me because of how big my cancer was. It was four inches by five inches. Then in terms of radiation, I was also very involved in that. They had originally recommended photon radiation to me, and they said that proton radiation is what some people can get, but it’s more expensive and insurance doesn’t usually approve it because it’s newer. But I was able to get it paid for outside of traditional insurance. So I was very involved in treatment based off of statistics, I guess would be my summarized answer.
We’ve adjusted to me, pretty much having to have him quit his job to take care of me on a full time basis. The doctor, I trust completely. My oncologist is wonderful. I really trust him in judging what kind of treatment I am undergoing, which is now a medicated chemo by pill form. Yeah, it’s been a lot of adjusting. And we really have never adjusted to our new life, which is no fun whatsoever.
I would say that the treatment to me, when I first heard about it, seemed very straightforward. I had a biopsy done, and I thought after a while I found the right breast cancer doctor. She explained, after seeing the biopsy results, actually I had two of them, one just for her, and she explained what probably was going to happen. I think she even had a very good idea of what kind of cancer it was. And mine is very estrogen prone. So she even told me what kind of medication I probably would have. All these things proved true. So it gave me confidence in her. So the deciding of the treatment was really up to the kind of cancer that I had. I did a minimum of research about what other options I had. Although I know a number of people with breast cancer, and I know what they did, but what this particular breast surgeon suggested to me seemed to be the right way. It just made sense to me. So that’s why I went with this particular person. And I’m still glad I did.
I manage this condition by doing… I have been on hormone treatments. I’ve been on targeted therapy. I’ve done the CD4/6 and it looks like chemo may be the next option because I have bone lesions that I’ve had radiation on and unfortunately they are still growing. My doctor and I, as I mentioned in the last call, we really are comfortable with each other. He’ll make suggestions to me and he knows I like to research it. I’ll ask him questions and then we decide on a treatment together.
Well, I currently take oral medication, and I get a scan every four months. The last two scans that I’ve had showed progression and I needed to go and have radiation on my hip. So how we decided on that approach is by looking at my scans and checking my blood every month.
We spoke with the doctor at the start of diagnosis and we came up with a treatment plan. I wasn’t really aware of what would be the right or wrong choice, but we tried a couple of things that didn’t work and then got on a regimen that did work of oral chemo and hormone therapy, some injections, but I’ve always made the decision with my doctor and provider because he likes to base it on how I’m feeling physically and quality of life.
As a metastatic cancer patient, I will be in chemo treatment for the rest of my life. I have done two clinical trials, both across the country at Dana Farber, which is in Boston. I live in Las Vegas, so that’s 2,717 miles away from home. So I’ve done two different clinical trials, both of which failed and am currently on a new treatment for triple negative called Trodelvy. How we decided on that was we knew if one or both, and it ended up both, of the treatments failed, that we’d go to this next treatment.
I am currently on Ribociclib or Kisqali chemotherapy orally every day. I take Nasadol every day. My oncologist and I are taking the strongest approach he knows how and I’m very trustful and I do whatever he tells me to do, and it just seems to keep my life better. Keep it quality wise, keep it normal, so to speak.
Well, when I was diagnosed over a year ago, my husband and I met with the oncologist and he gave us a couple of options for treatment. We researched the options and checked to see how they would react and how it would make me feel. Then we also went to Johns Hopkins in Baltimore, Maryland, and got a second opinion. The person that we spoke with there agreed that one specific combination that was mentioned with my oncologists back home would be perfect. At that moment, we knew that that’s something that we wanted to go with, was the combination that they both mentioned. How did I and the doctor decide on this approach? Communication. We decided together that that would be the best go around, that was the best choice for the type of cancer that I have, and the success that he had seen other patients have.
I am on my third regimen of chemo. I started out with Taxotere, Perjeta, and Herceptin. So now I’m on Kadcyla, and I’ve been on that for around 10 months. The doctor is talking about a new chemo treatment he thinks is promising for the next one. I don’t have a whole lot of input. The doctor is a very wishy kind of doctor, and he comes up with something and I pretty much take his word for it but that’s the thing to do because I think he’s a pretty smart doctor. But as time has gone on, I’ve become a little more pushy back as to what I’m going to take and I ask questions. I like to know ahead of time and give it some thought, and I go online and search out these medications so that I have some idea of what to ask him because he doesn’t think anything causes that much bad side effects. So therefore, that’s what I’m on now, Kadcyla.
For my breast cancer, which is triple negative, I had to go through chemo, as well as surgery. That was all I had to do, because there was no lymph node involvement. The chemo really sucked. The decision to do chemo first before surgery was a joint decision between myself and my doctors, and with the triple-negative breast cancer the suggestion is to do chemo first to shrink the tumor and then surgery, so that way it could have a better surgical results, because the idea is that it will shrink the tumor. And that is what happened for me, is the chemo shrunk the tumor, and then I had my surgery double mastectomy. I see the question is, how was it managed? It was managed very carefully and with a lot of care, trying to take it one step at a time, so that way it wasn’t overwhelming all at once. I think part of the good thing… I don’t know how I’m trying to say this, but I guess the question would be, how do I currently manage it? Is that I need to follow up with my doctors regularly. Now, I’m up to every six months, and treat the depression, since that’s my biggest issue right now, in post-cancer life.
There are currently no medical treatments available to help with my inability to perform my daily activity. My cancer treatments are lifelong and are the cause of all my disabilities.
Well, when I was diagnosed, I had to undergo the strong chemo where you lose your hair so I did that. And then they wanted to shrink the tumor and it didn’t shrink as much, so they did a PET… No, they did a mastectomy and an implant and then a PET scan and they saw that it spread. So they did not do radiation. So they decided on a, I think, it’s called systemic treatment, like I’m on Ibrance right now and two shots of Faslodex and Xgeva and some radiation for pain.
In my particular situation, managing my conditions have been difficult. My oncologist is a group that is very difficult to get through on the phone, very difficult to make an appointment, very difficult to keep an appointment once you get on the schedule, and they’re very, very slow to respond with medical questions that I might direct to them and ask for someone call back. Matter of fact, in one situation the nursing staff did not pay attention well enough on three phone calls, which ended up with me being admitted to the hospital due to poor follow up and poor care by the nursing staff. Another thing we have done is I’ve become more in depth with my questions and make sure that I fully understand what’s going on, and if I don’t I just keep on asking questions. I will let them know if I’m dissatisfied with the way I feel I’m being treated. I let them know if I’m dissatisfied with the way I feel I’m being handled, meaning, am I just a number or am I truly a patient to them that has cancer? Many, many times with my oncologist I have felt that I am a number to them and that they are overbooked and they have too many patients and not enough staff. Many times you’re passed off to the physician’s assistant, and they are just quick to get you out of the door on these follow-up appointments, and they don’t like to answer questions because they might not give you the same answer as the oncologist will. So a lot of my care has been done by my primary physician, and she has been just wonderful in helping me navigate the system to get answers to questions if she doesn’t know them. She has a great personality to be calm, cool, and collected, and she’s not afraid to tell me how it is, but yet doesn’t make it rude or seem like she’s lacking in empathy or compassion. Unfortunately I just found out here a few days ago that my physician was killed in a automobile accident, so I am now going to have to be searching for a new primary care physician, and I’m really struggling because I’m due for my six-month appointment with my oncologist that I don’t want to see.