A question for the Breast Cancer Community

What resources do you wish you had to help manage your or your loved one’s condition, but haven’t been able to find? What would your ideal support resource be, and how would it help?

Answers from the Community

I really can’t think of a resource that I couldn’t find. I am fairly resourceful.

I don’t feel like I have a super eloquent answer for this one, so forgive me for that. I feel like the biggest struggle for information or resources that I’ve had has personally been because of my age and the type of cancer I’ve had. It’s just breast cancer is so rare in your twenties, but I don’t feel like I’ve been able to find a group specific to people in my scenario. I mean, I do think that there’s a young survivor’s group for breast cancer that’s national. But I think I tried to look into it when I was first diagnosed and it didn’t feel like there was a very good forum aspect to it, which is what I most wanted. I didn’t really want to read a whole bunch of blog posts or whatever. I wanted to actually be able to interact with other women in their twenties who had breast cancer. That’s why I turned to things like Instagram. Then, the other benefit of that is I think, treatment affects our body so differently at different ages. So, the issues that I am still having as a 20-whatever with breast cancer is different than a woman in her fifties. I wish I could say to someone, “Okay, are you having these shoulder issues from radiation, because I am?” I don’t know. Again, I’m just really relational and every time I’ve tried to Google certain symptoms or whatever, like mostly medical journals come up and those are pretty hard to decipher. I mean, I’m fairly smart, but it’s just a lot of effort. Yeah, that’s it.

The resources I wish I had was more financial help. It is very difficult in my area to get anywhere. They have programs for veterans, people in the military, and I live near Fort Hood, so a lot of it is based around them. And I wish I had more local financial help available. There’s always stipulations. You have to be in this type of current treatment, you have to be between the ages of such and such, you have to be in the military. There are so many stipulations that, I understand the organization, that’s what they’re there for, and for certain people with certain things going on, but it’s hard. We are struggling. We are still late on rent for this month and it’s due by the third, late note or disconnect notices from the electric company, disconnect water and trash, internet, which is vital to me able to have to communicate with my doctors. My electric bill is high because I’m on a medication. I know I’m not really supposed to do side effects, but I excessively sweat. And I’m working on changing that. I’m working on changing that. So the A/C has is being used quite a bit for the reason that I’m excessively sweating. And I’ve been through menopause and this is worse. So it’s a struggle. I wish I had more resources for financial help and I’m not one to ask for help financially, but this has gotten to the point where I’m pretty desperate. And this is before COVID-19 and now it’s impossible to get any help because everyone is needing help as well. It’s been so hard, so hard. So my answer would be, financial resources readily available with no stipulations on it. I’m not talking private… Well I am talking private, but both private and government ran programs are really hard to get approved there. I applied, even though I don’t qualify. Of course, I get denied, because I knew I would, but I still applied just in case. Just in case. But it’s financially difficult.

Yeah, ideal resource. I answered that question before. Ideal resource. I don’t know. Resources that I felt very lucky living in the state that I live in, that there were a lot of resources I could choose to use. I didn’t have to go to another state or even out of my county. I could have. I could’ve gone to a big city, Philadelphia, Newark or whatever. I didn’t feel the need for that. Ideal support resource, I had it, I had it, and it was the people.

Something I really wish that I had, because I’m now on disability and I no longer work, except for this time where everybody’s home with the COVID. Frequently, I was home by myself a lot during the day. Because I’m not sick enough to need a nurse, I just wish that they could have provided someone to come over maybe once or twice a week just to talk for an hour or so, just keep an eye on me and make sure that I’m doing okay. Check up with my side effects, see how I’m feeling, maybe offer to go out for a coffee or maybe take a short walk. Some things that would really just kind of get me out of myself because cancer can be a very lonely and isolating disease. And it’s just, like I said, during the day, pretty much everybody’s working and you do spend a lot of time alone. So, I wish there was some type of support where I just could have company.

I believe my doctors and the websites already mentioned have been able to answer my questions and provide assistance to me.

Well, I don’t think that there’s been an awful lot of resources, except like I said, looking at other women that have the same type of cancer as me and have shown that they’ve lived for quite a long time that way. So that would be my support resources to find out how other people that are like me are doing.

More local support groups, in-person support groups, and also some sort of daily email. I would think that updates research on metastatic breast cancer, new therapies and solutions, medical treatments, things that are on the up and coming, I think that would be a really good resource. I haven’t really found one that focuses on metastatic breast cancer specifically. I usually have to search pretty hard for it.

If I could have a Genie wish on that, I would say, a person to talk to me, an oncologist, about as I’m reading clinicaltrials.gov, that can talk in my ears on navigating through clinicaltrials.gov, to determine which clinical trials may or may not work for me. But I would love to have some pre-work before I go with my printout, to have the top four or five instead of the top 12 or 13. So having an oncologist, not just a friendly voice, but somebody who knows clinical trials and knows metastatic triple negative, and knows my subtype and knows my androgen receptor and retinoblastoma status, and PDL one status, and all of the different other tests that I’ve taken, and is armed with that information and would help me.

One thing that I have a problem finding is resources in regards to financial assistance for having cancer and not having the ability to work just due to side effects and not feeling that I’m capable of doing the work to its full capacity. I haven’t found … I know that there’s a lot out there of ways to get help for free. I looked up free things and it’s very minimal. There’s not a lot of information available in regards to that. What else have I not been able to find? I’ve also not been able to find out what type of insurance type … I don’t know how to explain that. What I have available to me, not financially, health wise. I’m currently on disability, but I don’t know much about if I can be on Medicare or Medicaid along with disability and have my personal insurance. Things like that to help out with copays and financial burdens for scans and all of that. It gets really expensive really fast and it’s hard to be on one income and get a check monthly that is lower than the amount people get right now for being unemployed. It’s really crazy that people who are unemployed are getting unemployment checks that are higher than the disability amount that I get monthly.

I haven’t really looked for wish or any resource to manage my condition because I seem to find a lot on the internet and I can’t think of anything else I would want. Seems to me like anything you want to find for information is out there on the internet.

Financial. This is an expensive disease. Single mom. Yeah. I pay for my insurance, but it’s still expensive. Without the medication, there would be no me. And I have to be able to pay for that. And If you have a ton of money, and not have to worry about it. But it’s expensive. That’s my only thing, the finance part of it. It kind of makes everything crumble around you. So, definitely I wish I could find more financial help than is out there, to not have to worry.

This is a loaded question. What would my ideal resource be? My ideal resource would be someone who will spend their time, day in and day out, helping you find the exact help that you need. Most of the departments have a social worker, but I don’t find that that’s been super helpful to me. Like plastics - I don’t know if plastics has them, but definitely the breast surgeon has one, that I just think that - they give you a, basically a binder. I got two binders. I don’t even know from what departments. They give you a whole binder, like, “Welcome to cancer.” I think maybe one was like, “You have cancer,” and one was like, “You have breast cancer,” whatever, and gives you kind of like, somewhat of a roadmap of things that you’re going to encounter. But I really wish the one resource that I could have had was somebody specifically who can find therapists and doctors, mostly therapists that are in your area that are best-suited to help you because they have experienced in the area. I went to Georgetown University Hospital for my treatment, and they had one psychotherapist there. You had to come to DC, and I live outside of DC, in Maryland. So I’m still within the Metro area, but there’s no way I’m going to schlep so far. So I really wish that there was some type of resource. Oh, oh, I know. A resource where people like other survivors can share great doctors experiences, references to other doctors for each other. I don’t know if this actually exists, but I never came across it. So maybe I’ll create it or something. So that would be my ideal resource, is someone who could help me find - that participates in insurance and finding things like that. When it came to needing other medical supplies that maybe you’ll need temporarily but won’t use forever, that type of thing, also, kind of like a, I don’t want to say a co-op, but some type of sharing or something where people can share resources, that once they’re done using a piece of equipment or something or a clothing article, like for lymphedema, which I had, still have, that there was a place to go to either borrow or pass on. Oh, like wigs, that type of thing, also, so kind of things that only cancer people need, that they can go and share resources, but especially help finding a therapist that specializes in cancer. That’s the resource.

What I wish I had in my area is an in-person support group, specifically for those of us living with metastatic breast cancer. There are support groups available for breast cancer in general and after visiting them, I find that I cannot really relate to those types of individuals as we are dealing with completely different scenarios. So I think that would be very helpful and beneficial if there were such a support group that you could go to physically. I know there are several online, but just meeting with other individuals would be most helpful, I believe.

I think I’d like to have resources for the caregivers in my life, because they go through a lot too, and they take on a lot of emotion. And so, but actually, sailing heals. I was able to take them out a day of sailing. But I would just wish there were more caregiver resources.

For me, resources I found, like I said, a lot of help with American Cancer Society. They have been wonderful, patient, and kind, et cetera. One of the things is you can ask them questions, even if they’re just one off from what you’re looking for or your specific condition. But when you ask if something’s normal, they can give you an answer without making you feel bad for asking those questions. For me, an ideal support resource, I’m not big on groups, I’m not big on counseling, I’m not big on those kinds of things, but they’ve got to find a way to get into these nurses and these doctors in the oncology office that we are still patients. We are not numbers. We feel crappy when we come in, don’t get snappy with us, et cetera, et cetera. The surgeons have a tendency to only see you as something they’re going to operate on. They are not accustomed to having to deal with you face-to-face, and especially for any long period of time. I dealt with my surgeon for almost nine months on a weekly basis, and I saw quite a change in him during that time. But at the beginning I was thinking I will never be able to communicate with this guy, but it did eventually change. So as far as resources, support resources. It has to be our medical care team and our families and friends. And if you can’t get support out of that, for the most part, especially the emotional support, it’s not going to work.