Cure Talk In Conversation With Ann Silberman, Author of “Breast Cancer? But Doctor… I Hate Pink” – Part 2
Me: Can you give a brief outline of your treatments so far?
Ann: I had a mastectomy with tissue expander reconstruction, and then I began chemotherapy. I was to do six rounds of Taxotere and carboplatin and a year of Herceptin. I began to have neuropathy so my doctor switched the Taxotere to Taxol. I finished all of my treatment including the Herceptin, in December of 2010. Unfortunately, just a few months later, mets were found in my liver, making me Stage IV and thus, terminal. Since then I have had a liver resection and ablation. They removed half my liver, the left lobes, and ablated a cancerous spot in the right lobe. Unfortunately, that spot grew back and in a bad place, right next to the portal vein, so no more local therapies are available – at least for now. I then began ticking off chemotherapies. I have been on seven total so far. I have also added Perjeta and Zometa along with Herceptin and a chemo because I’m HER2+.
I just got good news: for the first time last month, a CT showed my tumor shrank by 50%, so the regimen I am on appears to be working. My current treatment is Gemzar, Herceptin, Perjeta, and Zometa. Unfortunately, with good news comes the bad – I find this a very difficult regimen to tolerate, unlike all the others which I sailed through. It is the Gemzar which is making me feel ill. We are trying a 50% dose reduction to see if I can manage it.
Me: Have you been part of clinical trials?
Ann: I have not yet been a part of clinical trials but I watched the TDM1 Emilia trial closely and now that TDM1 is on the market as Kadcyla, it will be my next drug when this current one no longer works. I am glad to have something like that waiting for me that can give me extra months. I am not opposed to clinical trials and would do one if one was appropriate.
Me: What would be your message be for women newly diagnosed with breast cancer?
Ann: My message for woman newly diagnosed with cancer is to rely on your doctor for information, and your family for support. Many of us stay up night after night, googling fruitlessly, trying to figure out what is going to happen to us. You will come to learn that is unknowable. You have so much to learn in a short time and so many decisions to make that are unfamiliar to you so make sure you write them down as they come, and ask your physician and rely less on the internet which does not know your specifics. Use your time with doctors well, and don’t be afraid to get a 2nd opinion. You will be in a relationship with your oncologist for a long time so it is very important that you trust him or her.
The statistics you will find online are old and are much scarier than the reality so try to keep that in your mind – so much of what you read isn’t true. If you are going to read online, stick to respected sites like Breastcancer.org, the Mayo Clinic, Medline, etc. Until you have your surgery, you won’t know your prognosis or stage or anything really, so you are just doing guesswork when googling and that always leads to frightening results. Also, realize that millions of woman have gotten through treatment and gone on to lead long lives and you can too. Most women don’t die, and for those of us who will – it is not fast. You will be around to see your son’s school play.
I recommend that early stage woman start planning their survivorship immediately by answering this question: what do you want life to look like when this is all over? If you have a tendency to fear-based thinking and anxiety, maybe some counseling is in order, as after treatment is over, many women become very frightened of every ache and pain thinking their cancer has returned. This has to be managed. I really believe women, due to the nature of the decisions they must make, the speed with which they must make them and the head-on, full-throttle medical world they are thrown into, are left with a form of PTSD. I think planning for survivorship and how you will manage your post-cancer life early on while still in treatment could be very helpful. Of course, I was diagnosed metastatic very quickly so I didn’t test my theory on myself for long but those months when treatment were over and before my mets were found were good months. I had my future back, I enjoyed my life, I recovered from treatment quickly, and I was going to close my blog up and put cancer in the past. I wish that for everybody.
My advice for Stage IV women is a bit different, obviously. I recommend you do your advance planning early on, and make sure your papers are in order, as they say. Also, check into life insurance policies – some let you have your money while you are still alive. I was not able to work post-resection surgery so I applied for SSDI, and they can rush it through, you may not have to wait the six months. Taking care of what you need to take care of for your family brings peace of mind, even if it seems morbid. And now, I just live one day at a time, and I don’t worry about the future. At first, you mourn all the time you aren’t going to get, but then you learn just live day-to-day. I am happy to be here for as long as I get and while being in treatment forever is physically difficult, I have good doctors who help me manage the pain, and I find small things to do with my time that I enjoy. I also have a housekeeper come once a month, which I believe is a necessity. I live with all males and so having a clean bathroom is a pleasure for me, even if it costs me a little money. I recommend that you concentrate on the many positives you will find in people and allow them to help you. And, let go of the people who will desert you because of their own fears and problems – and there will be some of those. People have been more wonderful to me than I could have ever dreamed, and despite my disease, I am quite happy.
Me: Thank you, Ann. It was great to connect!
Ann: Thank you very much for the interview. I appreciate it.