Janet S.
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Janet S. was diagnosed with Stage 2B breast cancer in her early 50s. When “called back” after her annual mammogram, she “ran over” to the clinic on her lunch hour, with little concern. But as soon as she arrived and saw the ultrasound equipment, she knew this was not going to be good. On top of her breast cancer diagnosis, genetic testing revealed she mutation on her ATM gene, which increases her risk for recurrence. Read more about Janet’s experience with inherited cancer risk here. While this was tough news, Janet also recognizes her good fortune. Her husband and daughter came to all her appointments. She has good cancer care and health insurance. As a medical social worker, Janet notes that her team, “checked all the boxes”— treating not just the cancer but recognizing her as a person.
Janet opted for a bilateral mastectomy and reconstruction, elective chemotherapy, and an oophorectomy. She also takes Femara, an estrogen suppressing medication, which she describes as “Satan-sent,” noting it is the worst part of her cancer journey. Surgery, recovery and chemotherapy were painful and tough, but their foreseeable end dates made them endurable. Femara, on the other hand, has caused Janet chronic pain and fatigue, making her once strong and flexible middle-age body feel old and vulnerable. Knowing these chronic side effects will endure for several years contributed to a depression that blind-sided her. She is now taking an anti-depressant. To Janet reducing her risk the side effects are worth it. She notes, “at age 55, I've got a lot of life ahead of me.” And she does!
Janet counts her blessings: her Stage 2 cancer is highly survivable; she had a relatively short run with chemotherapy; she did not need radiation; she knows that so many others have it much worse. Her husband and young adult children are very close and caring. They motivate her to persist. She has found an enduring sisterhood in her breast cancer support group. To cope with breast cancer and its aftermath, Janet has leaned into her deep faith and enlists her sense of humor. She notes that “cancer is so freaking serious, and it should be,” but staying in that “heightened sense of seriousness” leads to anxiety. She goes on, “there's always a silver lining, always. You may have to dig a little deep to find it… And often times, humor helps me find that silver lining.”
As Janet has progressed through her journey, she finally understands what other survivors have said, “that cancer was one of the better things that has ever happened to me was because of how I found out how much I am loved.” And that love is expressed by actions “without you even asking… people would appear with dinner.” To people on the breast cancer journey, Janet passes along some advice she got from someone who came before her: “don't be stoic. Don't try to take the high road on this. Whatever medicines they give you, take them. Take them as often as you are supposed to for as long as you need to.” To health care providers delivering devastating news, Janet, while understanding billing codes, advises them to not run away from emotions. She sees “so many doctors say, ‘well, sorry for your, sorry for your loss,’ and out the door they go.” Instead, Janet advises, “just sit and let that patient know that you're spending an extra 60 seconds... if you were to start a stopwatch and sit in silence for 60 seconds, you would be amazed at how long it takes 60 seconds to go by.”
Janet S. felt sure the effects of chemotherapy would be temporary.
Janet S. felt sure the effects of chemotherapy would be temporary.
I had to have four rounds of chemo. That is not a lot. You know, I hear of people having a whole lot more. It wasn't easy. It's not something that I would want to do every day by any means but, when you look back on it, it wasn't that big of a deal. It sounds so simplified and, I don't mean to be disrespectful to myself or anyone that has cancer when I say this because I feel like I came off easy. I truly do feel like I came off very easy compared to what a lot of people go through. Cancer for me was a bump in the road. It was a very significant bump in the road. It was a tough bump in the road but, it was just a bump in the road. I had a life before cancer and I have a life after cancer. And the things that I had to go through to get on the other side of this diagnosis, like I said, weren't things that I would want to do every day but, they were temporary. They were short-lived.
Chemotherapy motivated Janet S. to get out of “victim mode.”
Chemotherapy motivated Janet S. to get out of “victim mode.”
And I thought, “Janet, you've got a lot more fighting to do. You've got a lot more ahead of you. And you better damn well get yourself out of this funk so you can take on whatever you got to do to get on the other side of this.” And that truly is what started pulling, I kind of got out of the victim mode and crossed over into the fighter, survivor mode, and that, that is where I have stayed ever since.
Janet S. describes how her life changed during recovery, and the help she got from her husband.
Janet S. describes how her life changed during recovery, and the help she got from her husband.
You know, my husband has no medical training whatsoever but turned into the best bedside nurse that anybody could ask for. You know, and to his credit the first time he ever changed my bandages, to this day, I don't know what my chest looked like. I didn't, I didn’t look at it right after surgery. It's not that I really didn't want to. It's just, I really didn't have a need to. But he has since told me that the first time that he ever changed my bandages, he had to like freeze frame his face, because it was kind of like in his gut, but he knew he couldn't let that out in his face. He didn't want me to see him do that. But he said, “You, you looked pretty rough.” I was like, “Well, I probably did.” But there's just so much that your life just becomes everything that has to do with cancer or what was the cancer. You know, it's the, as I said, cleaning out your drains, changing your bandages, not being able to take a bath the way that you want to, having limited mobility. You know, I couldn’t get my arms beyond, I mean, I couldn't stretch my arms out. This was per doctor's orders, and I couldn't pick up anything heavier than a gallon of milk, and that lasted for six weeks. And I, you know, I couldn't drive. And just, your whole life changes, and everybody's lives around you changes, because all of a sudden, the things that you were used to just hopping up and doing and not thinking anything about, you can't do anymore. We, we learned to, you know, I couldn't even reach over to get the soap to wash my hands. You know, so we learned to pull everything to the edge of the counters. Or they got down my coffee cups for me. And, you know, I mean, you just turned your house into whatever it needed to turn into. They washed my hair at the sink, because I couldn’t get in the shower.
Janet S. says having tissue expanders turned out to be unexpectedly difficult emotionally.
Janet S. says having tissue expanders turned out to be unexpectedly difficult emotionally.
Then that started the I had what they called reconstructive surgery. And I thought that meant that I would come out of there with my new boobs, but that is not what that means. And, you know, I look back on it and I think, they explained that to me, but it still just somehow didn't make its way through. So, I had the implants. I guess they're implants, where they would fill them up periodically to stretch the tissue to get ready for the final implants. And I guess those fill-ups started about two weeks after my surgery. I went in for just my week checkup. And then after that, they started doing the fill-ups. And that somehow turned out to be a very emotional thing for me. I think, I know why, but I'm not. I'm sure this has been explained before, but, you know, they would just, they would use a numbing agent where the portal was, and then they would inject the saline. And somehow or another on one of the times that he put the numbing agent around the portal, he hit a nerve, and I came off the table. And that was the beginning of my downward spiral for the anxiety that I would have over these, these fill-ups.
Janet S. appreciates that her doctor was candid about–and sensitive to–the potential for difficult side effects from hormone therapies, while encouraging her to persist.
Janet S. appreciates that her doctor was candid about–and sensitive to–the potential for difficult side effects from hormone therapies, while encouraging her to persist.
Dr. [NAME] told me early on when he, when he told me that he wanted me to take it, he said, some women cannot do this. So, the, the side effects get to the point that they just, he didn't use these words, but this is what I think he meant, quality versus quantity. It just gets to the point that you're willing to risk having the cancer come back because you're so uncomfortable with the side effects that, that the medicine is causing you, which, you know, kind of leads me to the thing. That's why I said I'm so excited about doctors possibly listening to this because I think it's important. I mean, I'm so very fortunate that my medical team shares these things with me, but I don't know that all doctors do that. And, and I think it's just important to know that, or for doctors to realize that what they are prescribing their patients for what they hope is a longer lifespan is causing them problems with the life that they're leading. And that doesn't necessarily mean that you should not prescribe it or that the patient would not want it. But it was nice for my doctor to tell me, you need to be paying attention to your body while you're taking this, because a lot of people have trouble with it.
Janet S. says hormone therapy has been the hardest part of having cancer but she still wants to take it.
Janet S. says hormone therapy has been the hardest part of having cancer but she still wants to take it.
But there's also a drug that I take every day. It's called Femara, if you've heard of that. And it is a hormone suppressant, and it has turned out to be what I call ‘Satan-sent’.
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It has not debilitated me, but it's come darn close to it. I'm in chronic pain now in my hips.
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So if there were any, you know, if someone were to say, “What is the worst thing about having cancer?” It would be the Femara that I am taking right now. It's not the surgeries, it's not the chemo treatments, it's not the learning of it, or the biopsies, or any of the stuff that led to it. Those were not great times, but this is every waking hour. So, this is the worst part so far. But because I want to be around for as long as I can. I have a rare, my gene is ATM gene, it's a rare gene, breast cancer gene. There's not a whole lot known about it. It increases my chances of pancreatic cancer. It also increases my chances of liver cancer. And then, of course, there's always the reoccurrence of breast cancer. So, and I know that if cancer comes back, it is going to come back with a vengeance. Well, statistically it will come back as a vengeance. I shouldn't say I know. So, I take this Femara to lessen my chances of all of that. And at this point in my life, it is worth it. Now if I were 80.
Janet S. wonders whether her fatigue is due to depression or hormone therapy.
Janet S. wonders whether her fatigue is due to depression or hormone therapy.
I’m actually trying to decide. I'm currently trying to decide whether or not this heaviness of my body that I'm feeling is the depression that I think I am starting to suffer because of these side effects and my inability to do things, or whether or not I am genuinely feeling the fatigue in my body. And I know that depression, you know, can mask that. So, I’m not quite sure which it is. It's probably a little bit of both.
Janet S. explains how important her breasts are to her sexuality.
Janet S. explains how important her breasts are to her sexuality.
As far as having my breasts removed, that did kind of, I don’t want to say hit my sexuality, but it kind of tinged it a little bit. You know, I mean as we as women, you know, that’s one of the things that, I mean there’s a lot of difference between men and women. But maybe that’s how I self-identified with my sexuality and being a woman was through my breasts. And the fact of not having them bothered me a little bit.
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I can remember saying to [NAME] I said, “I want to be the same size that I was before all this got started.” You know, that is what I was. That is how God made me. That is what I am used to seeing in the mirror. I want that back. I do not want to have to go change bra sizes, or shirt sizes, or anything like that. I don’t want anything to be different about my physical appearance because of breast cancer. I just, I don’t want it, meaning cancer, I don’t want it to have that kind of control over my life. It’s dictating how I live, lead my life for a period of time, but when this is all said and done, and this is in my rear-view mirror. I want to be able to visually present myself as just anyone else on the street.
Janet S. no longer sweats the small stuff.
Janet S. no longer sweats the small stuff.
This has definitely made me not sweat the small stuff. And I have also gone on to discover that most of it is small stuff. And if you're always focused on seeing the bad, or the negative, or the worrisome parts, yes, those parts are there. They're always going to be there. But worrying and stressing about them aren't going to change them. I don't take myself as seriously as what I used to. I can laugh at things easier than what I think I used to. Things just don't bother me. There are so many more important things in life to focus on than the petty things. It's about serving yourself. It's about being fair to yourself. It's about loving the people around you, and accepting their love back, and accepting the people who are in your life for who they are, and what they are, and not wanting them to be more or less than what they are. Appreciating just everything.
Janet S. was blindsided by deep depression after her treatment ended.
Janet S. was blindsided by deep depression after her treatment ended.
I wished I had known to expect that deep depression. That blindsided me. That absolutely blindsided me. It’s not a normal state of mind for me, and that, was the, I mean, I've had other, I'm like anybody else, I've had other tragedies in my life. But that was the most, that was the darkest, most depressed, I want to say void. I'm not even sure that's the right word. I just felt like I was in the deepest, darkest pit. I felt like I was in a black abyss. Maybe that's the better way to put it. Because I couldn't see an end, I couldn't see sides, I couldn't see a top, I couldn't see a bottom. It was just all-encompassing. And I have heard since then that is not uncommon.
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Oh my god, it blindsided me. And of all my wonderful caregivers, and, or medical team that I had, nobody told me about it. So, when I started experiencing it, I kind of had a what the hell's going on thing here. And I did a lot of, I mean, you know, I started feeling sorry for myself, and the “Why me?” And, you know, I did all the things that you do when you get into a depressed state, and it was not a good place. It was not a healthy place to be. So, a little bit of warning for that would've been nice.
Janet S. suggests ways to help someone who doesn’t have a good support system.
Janet S. suggests ways to help someone who doesn’t have a good support system.
I would say to somebody that wants to help someone that doesn't have a lot of depth in a support system: find out the days that they're going for their treatments, or their doctors' appointments, and just make arrangements to drive them. Not so much ask, just say, “What days are your treatments?” And whip out your calendar and find days that you can take them. Come in and do house cleaning, laundry. Depending on where, you know, “You're kind of out in the sticks right now, so we don't get delivery of food. We’re all the way up.” But if you're in an area and you know the person's address, call Domino's and have a pizza delivered to the house one night. You know, it doesn't have to be anything grand.
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Just come over and do my laundry. You know, especially for those folks that are not fortunate enough to have support systems. Doctor’s appointments, food, laundry, grocery shopping, picking up medications, helping them tap into a support group, if that's what they're interested in.