I was diagnosed in June, 2015 with early-stage invasive breast cancer that started in the milk-duct. From the moment of diagnosis there were so many decisions. Who do you want to have do your surgery? What’s the best radiation treatment for you? Who will do the reconstruction surgery? What do you have to do for pre-op? Which tests are covered by insurance? What hormones should you take? What happens when no matter how many times you tell yourself “you’re fine it’s no big deal” you’re really not fine?
Here are some things I found out along the way. Some things came up in conversation or because I was having a particularly emotional day. They might have come casually from the receptionist in radiation. Or I found out as an “of course you know this” from the nurse as I was being rolled into surgery.
These are things that were helpful to me, that would have been nice to know ahead of time (in no particular order).
Imerman Angels
Imerman Angels is a network of volunteers that provides one-on-one cancer support. I don’t know how their “matching algorithm” works, but it’s spot-on! I was matched with a woman in Virginia who had had very comparable cancer. She was a body builder and into holistic health. She was a perfect match to understand things like my concern about how I was going to teach aerobics again. Or my angst about treatment and where the comfortable balance was for me between medical intervention and alternative holistic approaches.
How did I find out about Imerman Angels? The Edison Park Chamber of Commerce selects a charity each year for their annual Thanksgiving Turkey Trot. It just so happens that the year I had cancer was the year they picked Imerman Angels. So I found out by pure coincidence in October or November, after my July surgery. But it was great. I only talked to my Angel two or three times by phone, which was what I needed to get through this difficult time. Now we are Facebook friends, and I send her an “all clear” note on each anniversary.
This is a really fantastic resource.
Cancer Wellness Center
It took having a sort of anxiety attack at radiation one day for someone to share that there was a Social Worker available to cancer patients at Northshore Health System, where I got my care. Good to know, right? I met with her and she mentioned Cancer Wellness Centers, a not-for-profit in Illinois that “through supportive care and education…seeks to improve the emotional and physical well-being of people affected by cancer.” How amazing and caring that someone created this not-for-profit just to provide comfort and support for cancer patients.
All you had to do was have cancer! Then you could sign-up for free massages, free foot reflexology and more. I never did the support groups (both the Cancer Wellness Center and Northshore Health System offered them) because I felt like I didn’t belong—that I wasn’t sick enough to be there. And I didn’t want to talk about being sick!
Instead I met with the ‘free’ therapist at the Cancer Wellness Center. I spent an hour explaining in obsessive detail why I didn’t need therapy, at the end of which he said “I can’t help you because you are bat-sh*t crazy!” (Not literally, but that was the gist.) While awful at the time, that experience at least made me finally realize that perhaps having cancer, whether I wanted to acknowledge it as a big deal or not, was a big deal. And, to be fair to the Cancer Wellness Center, they state outright that their free therapy was only to talk about your cancer. But I would argue that premise doesn’t make sense because your cancer doesn’t exist in isolation. It becomes a lens that shrouds or magnifies everything else.
There’s a Back Door Entrance to Radiation (Conveniences)
I found out my very last day of radiation that there was a side entrance with parking right outside a special side door that went directly into the radiation area. I had been parking in the main lot and coming into the main entrance of the hospital, walking the long corridors to get to radiation. The question to ask here is, “are there any conveniences that you offer to make my experience less awful?”
Not knowing about this secret entrance turned out to be a gift in disguise for me. Coming through the front door every day I became friends with the valet. My first day in he mistook my slight nervousness as someone coming for their first day of work. I explained what I was there for, and he offered a hug of support. He then greeted me with a smile and a hug every day for the next two weeks. I really came to welcome and anticipate that.
So Many Choices: Cancer Treatment is not “One Size Fits All”
My biggest “words of wisdom” or lessons-learned is self-advocacy around our health and our bodies. Your health-care and getting the right treatment plan for you is a partnership with your doctor.
Treatment and advances in cancer care happen all the time. And, thankfully, there have been many research studies so we know more and more. (Please note that each person is different and you need to work with your doctor to do what is right for you given your diagnosis.).
Radiation
Here’s what I found. Long term outcomes were comparable for people who had mastectomy, full breast radiation or partial-breast radiation. (Chemotherapy was not prescribed to treat the type and stage of cancer that I had.) Some might see that and say give me the most thorough so I don’t have to worry. For me, I wanted to do whatever was least invasive, with the least side-effects but without risking my long-term health outcomes…when I couldn’t predict the future. I went with partial-breast radiation. Partial breast radiation focuses a more powerful beam on the area where the lump was removed (as opposed to a less powerful beam that targets the full-breast). Partial breast can last as little as two weeks as opposed to six weeks for standard treatment. That shorter time frame was also a boon.
Lymphedema Risk
The standard rule is after you have had lymph nodes removed for testing (to see if the cancer has spread beyond your breast), you can’t raise your arm above your head, you have to wear a special compression sleeve for long flights, and you can’t lift heavy weights. This is not great if you are a group fitness instructor.
Lymphedema refers to swelling in your arms or legs (for breast cancer it would be your arm) caused by the removal of or damage to your lymph nodes. Here’s the thing. In the “olden” days they (for me “they” was Dr. Yao, my cancer surgeon) would take out a lot of lymph nodes for testing. The more lymph nodes removed, the higher the risk. For the stage 1 cancer I had my doctor only needed to take out 3 to 4 lymph nodes. While most oncologists will tell you have to be worried for the rest of your life, I found an oncologist who said I was at low risk, and to simply look for symptoms, as opposed to automatically applying the one-size-fits-all approach.
Picking your doctors
A reminder, even when you have an urgent situation—you are still the “customer”. Most health systems will have choices for doctors in each area that you need. My “scientific” approach is to ask for a recommendation from my primary doctor, and then look at all the online reviews on Healthgrades and other online review sources.
You could say I kept changing oncologists until I found one that I liked (truth was I probably just on principle didn’t like having to see an oncologist). I did go through three, because the first two were ‘by the book’ treatment from when breast cancer was first discovered. Yet there are so many new studies that come out all the time. It troubled me that the oncologists weren’t familiar with any of them. They finished medical school 20-25 years ago and that’s what they continued to prescribe. That would be like me as a marketer not offering clients any online solutions to their marketing needs.
Finding a Doctor you Trust
And this is where I am so grateful for Dr. Arif Shaikh, my radiation oncologist. Whereas some doctors were clearly impatient at the fact that I was up reading studies each night until deep into the night…with Dr. Shaikh, it was like sport. I met with him before I started my radiation treatment and once or twice more during the course of treatment. I would refer to specific studies that offered one course of treatment over another or showed new trials or treatments coming down the pike.
“Well,” I would demand. “How come no one told me about this?” “Why did you recommend A when the study suggests B is better?” Dr. Shaikh was amazing. He always knew every study I was referring to. There was nothing I found that he didn’t already know about. And in each case he could relate it back to my unique (in the true sense—specific to me) situation and explain so clearly why it would or wouldn’t apply to me.
Ultimately it is the patient’s decision as to the course of treatment you will take, but it felt so good that I had exhausted every question or possibility and could see, with his help, the medical logic behind my decisions. In the end he went above and beyond to invite me to call if I had other questions as I continued my recovery. And he said I “was a fun patient” on my last visit. I still do find our meetings funny—me with my notes and research at every appointment, he at the ready—knowing so deeply what was happening at the forefront of cancer research.
Cancer Surgery
(Warning TMI below, and probably only of interest if you are actually going through this)
You can ask for pictures
If you are going to have reconstruction, yes, you can ask for pictures. You can see “before” and “after” pictures of others who have had a comparable surgery (lumpectomy followed by breast-reduction.) It was comforting to me to see what an artist Dr. Mark Sisco is. Truly. And not all doctors are the same in this area. Years ago I had considered breast reduction because of back and lifestyle issues. The doctor I consulted did not make pretty boobs.
With Dr. Sisco it was reassuring to know ahead of time the quality of surgery that I could anticipate.
Tubes and bulbs (post-surgery drainage)
Maybe it was better I didn’t understand this ahead of time, but you actually have drainage tubes coming out of your breasts after surgery that connect to a bulb that collects the fluid. There is no other word for this than YUCK! But, apparently fluid builds up around the surgical site and you are more prone to infection if you don’t do it. It bodes for better and ultimately quicker recovery. But…don’t plan to go out for a few weeks after surgery, and have a very loose, button down blouse that you can wear for a few days.
Numbness can last over a year
Funny—writing this article made me realize the upper right quadrant of my right breast, where the tumor was removed, is no longer numb. I bet it was a good two years post-surgery that it was still numb. I had long since decided that it would never go away. But every time I asked the nurse, at annual checkups or in panicked notes in between, she continued to reassure me that this was normal.
Follow-up Year to Year
There are two exams you will get each year, the Diagnostic Mammogram (which is basically a mammogram) and the newer ABUS, the Automated-Breast Ultrasound Screening. You’ll want to do both. And when you call to schedule it, let the technicians know you want to do both, so that hopefully you can get them scheduled on the same day (less trips to come back!). Your doctor will let you know how often to come back as well, after your recovery from your initial surgery. It likely will be every six months, with the ABUS and mammogram annually. And, I won’t lie. I am anxious as all get-out the week or so leading up to the annual follow-up and so relieved when I get the all clear.
*This is week three of four in a series of articles written during October Breast Cancer Awareness Month, sharing my cancer story, in case there’s something helpful to others. Hope you will also read week 1, how I found out, and week 2, how friends can help. Week for is about Post-Cancer Perspective, What Scares you Dares you.
