Advice

For younger women, self-examination is often the only way a problem will be recognized. I was diagnosed at 27(almost 28) and wasn't even eligible for mammograms at that time. Thank goodness I knew what was/wasn't normal for my breast. Though, of course, I didn't find the tumour till it was large enough to be noticeable – but that’s better than not finding it at all. Be aware of the changes in your body. Make sure you do everything possible to stay healthy and limit stress. Most of all, don't forget to make regular breast self-exam. Don't be fooled by the fact you have no cancer history in your family or your breast are small.

An advance directed is often offered at the point of admission to the hospital or in a physician’s office. An individual has the option of naming a family member or friend to act as their voice should they be in a position where they are unable to communicate. Choice of care options can be communicated in writing as part of the advance directive, one can be very specific. It is also recommended that the individual has a conversation with her physician and loved ones about their specific requests. Hospital and physician will indicate the presence of the advance directive in the patient record.

Individuals with concerns about how to broach the subject of end of life care with loved ones should speak with a counselor. An advance directed is often offered at the point of admission to the hospital or in a physician’s office. An individual has the option of naming a family member or friend to act as their voice should they be in a position where they are unable to communicate. Choice of care options can be communicated in writing as part of the advance directive, one can be very specific. It is also recommended that the individual has a conversation with her physician and loved ones about their specific requests. Hospital and physician will indicate the presence of the advance directive in the patient record.

Individuals with concerns about how to broach the subject of end of life care with loved ones should speak with a counselor.

Even though I'm not the founder of the Inflammatory Breast Cancer Research Foundation, I have been involved from the very early beginnings back in 1999. I think one of the most important aspects to consider when starting an organization is determining if there is a need for the organization.

As a group, we looked at what breast cancer information/education was 'out there' and realized there was next to nothing about inflammatory breast cancer and there was very little research focus. For those reasons we opted to keep our focus quite narrow. There are great organizations doing a wonderful job with information and support for standard breast cancer and we have no desire to duplicate what they are doing. We keep our focus on inflammatory breast cancer (IBC) and try to make our website and other information specific to the needs of the IBC community and those seeking IBC information. IBC research was extremely limited so we knew that needed to be a primary focus.

Funding is always a challenge. By remaining focused, not having a walk-in office, or paid staff we are able to keep our administrative expenses to about 7% of our budget. This allows us to put well over 90% of received funds into the mission and goals. In these economic times it can be difficult to function solely on private donations but we've been fortunate to have people who believe in what we are doing and contribute as they can.

In recent years we've partnered with a private foundation on some grants so we are able to support more research projects with their support. Often more can be accomplished if we find ways to work together.

Ultimately it is all about passion. You can't do this kind of work unless you have a passion for it. We aren't in it for recognition, personal gain, and certainly not for financial gain! Each of us involved with the Inflammatory Breast Cancer Research Foundation does so because the disease has touched our lives in some way and as a result we've realized we must act. No longer is it about "us"...it is about all those who have been touched by IBC and trying to build a future without this disease. Even though I'm not the founder of the Inflammatory Breast Cancer Research Foundation, I have been involved from the very early beginnings back in 1999. I think one of the most important aspects to consider when starting an organization is determining if there is a need for the organization.

As a group, we looked at what breast cancer information/education was 'out there' and realized there was next to nothing about inflammatory breast cancer and there was very little research focus. For those reasons we opted to keep our focus quite narrow. There are great organizations doing a wonderful job with information and support for standard breast cancer and we have no desire to duplicate what they are doing. We keep our focus on inflammatory breast cancer (IBC) and try to make our website and other information specific to the needs of the IBC community and those seeking IBC information. IBC research was extremely limited so we knew that needed to be a primary focus.

Funding is always a challenge. By remaining focused, not having a walk-in office, or paid staff we are able to keep our administrative expenses to about 7% of our budget. This allows us to put well over 90% of received funds into the mission and goals. In these economic times it can be difficult to function solely on private donations but we've been fortunate to have people who believe in what we are doing and contribute as they can.

In recent years we've partnered with a private foundation on some grants so we are able to support more research projects with their support. Often more can be accomplished if we find ways to work together.

Ultimately it is all about passion. You can't do this kind of work unless you have a passion for it. We aren't in it for recognition, personal gain, and certainly not for financial gain! Each of us involved with the Inflammatory Breast Cancer Research Foundation does so because the disease has touched our lives in some way and as a result we've realized we must act. No longer is it about "us"...it is about all those who have been touched by IBC and trying to build a future without this disease.

This is a great question. When I completed treatment I had a passion to help others. I wanted to start volunteering somewhere local to help other survivors. When the idea for Pink-Link popped into my head, "connect survivors with each other online", I knew I had to go for it. It's hard to start any kind of new venture, but I took baby steps and focused on what I needed to do each day. If you have the passion, then you'll be successful! This is a great question. When I completed treatment I had a passion to help others. I wanted to start volunteering somewhere local to help other survivors. When the idea for Pink-Link popped into my head, "connect survivors with each other online", I knew I had to go for it. It's hard to start any kind of new venture, but I took baby steps and focused on what I needed to do each day. If you have the passion, then you'll be successful!

I don't know if that fear ever totally goes away. I am four years post chemo and almost five years post mastectomy. In the span of a month (recently), I had myself in the internet pine box. Every weird episode and every ache and pain that is in a potential "mets" spot and I still have to talk myself off the ledge. I do believe it's definitely a form of PTSD and although it might get better, a cancer dx changes you and it changes you forever.

I found yoga about a year ago, too. That has helped. Pushing the thought out of your head isn't going to do the trick. At least it doesn't do it for me. I have to process the fear in the moment I am feeling it. Even if I KNOW I'm being completely irrational and illogical, feelings are just that. FEELINGS.. and the worst thing, for me, is to attempt to diminish the feeling. Or ignore it. I found when I do that, the damn thing takes on a life of its own and definitely becomes worse than ever and the fear is suddenly larger than life.

If I can't shake the fear and I realize I'm being a bit over the top, I will do things like blast a "feel good song" .... go grab a glass of water.... walk outside if it's a nice enough day..... sit on the yoga mat and do some gentle stretches.... And, honestly, if I can't get myself recentered, I use the anxiety medication. Fortunately, I don't have to use it frequently but if it's necessary, I will take something.

The fact that you are still experiencing pain isn't helping the situation. The pain in itself is a constant reminder so it's not difficult to just make that mental leap. I think as the pain subsides and it's less "in your face" these frightening feelings will become more manageable and will occur less frequently.

Yes, it does take time and it helps if you have a buddy (one buddy) who can help talk you off the ledge. I have a girlfriend who (last month) said, "you need an MRI" (I swore I had brain mets because of two unexplained falls in a 90 minute period of time). When I told her that I was NOT doing that, she switched gears and calmed me down. (She did monitor my "are you falling" in her own sneaky way for the next several weeks...) ....

Talking helps. I hope you keep reaching out. Coming here and just asking the question is a great step in a good direction.

All the best,
AnneMarie As a speaker, I often talk about the power of fear in our lives. Between my first and second diagnoses, I had a health scare that led me to believe that the cancer had spread and I knew if it had, I was in real trouble. My fear wasn’t dying but leaving my then 14-year-old daughter alone in this world to fend for herself. It was my absolute worst fear and one that, at the time, was too horrific to even wrap my mind around.
With the help of a counselor, I was able to actually face that fear and by doing so, I took away its’ power. You need to ask yourself, what if your cancer does come back? What does that mean for you? What will you do? Are you fearful of dying? Are you fearful of leaving your family? What other things about a second diagnosis scares you? Do you think you are strong enough to fight it? All these questions and a hundred more will surface.
When you have identified your fears, you must look at each one of those and break it down. For example, I was afraid to leave my daughter behind. I had told myself that because I had been a single mom and it had been just the two of us for so long, she wouldn’t make it without me. What I learned by looking at the fear closer and being more realistic about it, was that she had an excellent support system in place. I had a life insurance policy which would get her through college and then some. She still would have a great father and step-mother as well as extended family around to get her through the rough times. She was an outgoing child, so even though she might have to relocate, she would make new friends easily and most importantly, I knew I had already given her the foundation for which she could build the rest of her life. I knew there would be times in her life, during those monumental moments like graduation, marriage, her first child, that she would miss me and wish I were there, but I also understood that she would get through it, like countless others have. When I got to the other side of all the fear, it was clear that she would, indeed, be able to make it without me and there was now a plan in place, i.e. she would move in with her father; her extended family would surround her; and I put a trust together for her care.
Although, the process was the hardest thing I’ve ever done, it was also the most liberating because it taught me that fear isn’t real. The fear lost its’ power and I wasn’t scared anymore.
If you can ask yourself the questions above and answer them pragmatically, without the fear, the same will happen for you. There will be a plan in place and if you have to face cancer again, you will already have a roadmap for how to deal with it in place.
Let’s look at the big one. “What if I get cancer again?” Okay, what is the first thing you will do? My answer would be: Get a second opinion. “What if the second opinion says I have it?” My answer is: Then I will get my support system in place and I will begin to work with my doctor to decide my best option of care. “What if it is worse than before?” My answer is: I am a strong person and I have been through this before, so I know that I must take it one day at a time and do whatever I can to take care of myself the best I can.
This is the process you go through and it is so important to do so, because if you don’t, you could end up making some of your healthcare decisions based on fear instead of what is best for you. I truly believe anything you do out of fear will be the wrong thing.
I hope this has been helpful and I hope that by going through this process you can put your fear behind you. I think you will find that once you have done this, you will feel more empowered than you ever have.

A recurrence of the original primary tumor or a new tumor can be devastating psychologically - while many women understand that cancer can come back, no one expects it, just like most don't expect the original diagnosis. Take some deep breaths, and as noted above, face it head-on. Try not to let your emotions and fears get the best of you, and realize that science and treatment advances may mean better and more effective treatment options than were available to you previously. A recurrence of the original primary tumor or a new tumor can be devastating psychologically - while many women understand that cancer can come back, no one expects it, just like most don't expect the original diagnosis. Take some deep breaths, and as noted above, face it head-on. Try not to let your emotions and fears get the best of you, and realize that science and treatment advances may mean better and more effective treatment options than were available to you previously.

"Bird by Bird: Some Instructions on Writing and Life" by Anne Lamott is a great resource for writers. Write because you love it. If you're passionate about writing then everything else follows. Readers will experience it, audiences will see it and your life will show it--your passion then naturally overflows into other's lives. Success follows when you write because you love it!

As a caregiver for someone with breast cancer, I wish that when I announced it people said simply that they are sorry and asked me what they can do to help.

Mainly, I wish that people would ask me how things are going and how I am doing, instead of expecting me to bring it up. I know that it is an uncomfortable subject so I do not want to bother people with it. Checking in with people is important. They could be depressed, anxious and may not be able to reach out for help because they feel all alone.

The best approach was when someone said "I just wanted to ask how everything is going with your (sick person), if you don't want to talk about it that is okay. I just wanted to ask." This was the best approach because I do want to talk about it. No matter what it is always on my mind.

Please support others by addressing the topic, taking them out for coffee, cooking them dinner, go food shopping with them, etc. any little thing that may be too much for them to handle on their own. As a caregiver for someone with breast cancer, I wish that when I announced it people said simply that they are sorry and asked me what they can do to help.

Mainly, I wish that people would ask me how things are going and how I am doing, instead of expecting me to bring it up. I know that it is an uncomfortable subject so I do not want to bother people with it. Checking in with people is important. They could be depressed, anxious and may not be able to reach out for help because they feel all alone.

The best approach was when someone said "I just wanted to ask how everything is going with your (sick person), if you don't want to talk about it that is okay. I just wanted to ask." This was the best approach because I do want to talk about it. No matter what it is always on my mind.

Please support others by addressing the topic, taking them out for coffee, cooking them dinner, go food shopping with them, etc. any little thing that may be too much for them to handle on their own.