Your ideas for training therapists

Ksusan, first I would like to say thank you to you and your trainees for addressing the great need for therapists with background and training in oncology. I believe every cancer patient should have access to such a therapist, and there are not enough out there. Most psychologists or social workers who do have oncology training work in a hospital setting, and it is very difficult to find one in private practice, and even harder to find one who is taking new patients and accepts insurance. I ended up paying out of pocket and driving a great distance to meet with a wonderful psychologist with the right experience. She helped me tremendously with adjusting to my metastatic diagnosis, and living well with cancer.

One thing to keep in mind is that many cancer patients are mentally healthy people who simply could use help adjusting to a serious health issue and difficult treatment. The DSM and insurance companies encourage the assigning of diagnoses, but sometimes you just have a person with normal reactions of fear, grief, etc. who needs support and ways of coping. It was extremely helpful to me when my psychologist helped me to understand that grief is a temporary condition that one can get through and then feel better, in spite of cancer. Mindfulness training and CBT are useful. For example, "just" knowing I am ok right now, and changing from fearing how things would go or how I would feel at a certain point in the future, to viewing it as neutral or unknown, made a big difference to me. Also, know that treatment side effects (from chemo, targeted therapy, anti-estrogen therapy) can include fatigue and sleep problems, so these things may or may not be symptoms of depression.

Another thing I'd like to point out is that it seems to be a common thing for bc patients/survivors to get through the initial crisis of surgery, dose-dense chemo, and/or radiation, then feel emotionally worse when they are put on maintenance treatment or no further treatment and are released from the flurry of appointments and told by their doctors to come back some time later. That's when they have to figure out how to live with the physical effects of cancer and cancer treatment, and (even more difficult in my opinion) with the sword hanging over their heads. That's when other people think they are done, they are fine now, they should be happy and grateful and pink and get back to normal.

I agree with MTwoman that it is good to have a therapist you can cry to who will listen well. Sometimes we don't want to dump everything on our loved ones, and we are not looking for solutions so much as wanting to not feel alone.

Finally, I think it is helpful for the therapist to have some understanding of typical breast cancer diagnosis and treatment paths, so the patient doesn't have to explain so much. (See the NCCN guidelines and flow charts.) Learn about the disease itself. (I once met a nurse who led a bc support group who actually believed that the bc survivor is no longer in danger of recurrence after five years.) Know what scanxiety is. Understand how treatment can affect a person's sex life (physically and mentally). It seems to me that visiting a cancer center and shadowing providers or patients, if allowable, would be enlightening.

"Finally, I think it is helpful for the therapist to have some understanding of typical breast cancer diagnosis and treatment paths, so the patient doesn't have to explain so much. (See the NCCN guidelines and flow charts.) Learn about the disease itself. (I once met a nurse who led a bc support group who actually believed that the bc survivor is no longer in danger of recurrence after five years.) Know what scanxiety is. Understand how treatment can affect a person's sex life (physically and mentally)."

THIS! That goes for doctors and other healthcare providers too. It gets old really fast to have to explain why you don't want recon and why you are not a good candidate anyway, as one example. It also gets old having to explain to people that 5-yr survival means little in BC. I even had that bleepin' convo with my onc, actually both blepin convos. Then when you explain, they often tell you not to be so negative. Arrrggghhh!

Further pointers:

Please do not assume that the loss of one or both breasts is the most traumatic part of all this.

Please do not assume that going through a mastectomy leaves a patient feeling less "feminine". It might for some, but is not universal.

Once you understand the disease and its treatment, think about practical solutions for the new challenges we face as BC patients. I use the term "patients" rather than "survivors" for 2 reasons. 1. Most of us receive maintenance treatment and/or follow-up long after the initial, active treatment phase. 2. We are only survivors if we die of something else, and as already noted, there is no magical anniversary that makes us "safe". This is, in practical terms, a chronic disease and we have to adjust in order to live with that.

We all adjust in different ways, but our lives have usually been changed drastically by the disease. I often meet the attitude that I should get back to "normal," i.e. my pre-cancer lifestyle. For example, people constantly suggest that I should get a boyfriend. Even if I were still physically able to do that, which I am not, cancer has made me quite egotistical. I want my life the way I want it, and I am not really interested in being responsible for someone else. Apart from that, I no longer have breasts and I am on femara, nuff said. So, for therapists, they need to be open to that and really hear where the patient is coming from. I would, for example, be happy to get some pointers on how to shoot people down politely when they start this line, without having to go all TMI on them. Also pointers on how to establish friendly relations with men, without it going "there" and without having to overshare personal stuff.