Not just another Breast Cancer Awareness List

The unfortunate fact is that someone you know is likely going to be diagnosed with breast cancer in your lifetime. I am a survivor of stage 2 lobular invasive breast cancer. I underwent a modified radical mastectomy, radiation and take long term hormone suppressor drugs. I am 18 months since diagnosis and 6 months since being cancer free and on the 5 year maintenance plan.

In survivor mode now, I have some perspective and comments that I think will help other people. October is Breast Cancer Awareness month and I know your email and social media feeds are pink flooded, but I hope if you do give me some of your valuable time to read this it will be worth it. Maybe you can pass it along to someone else.

The theme of this is Awareness through Self Advocacy. I’m going to be brutally honest here about things for which I am proud I made a well researched stand, and things, in hindsight, I wish I had done differently. I sincerely hope you never have to consider any of these for yourself or for someone you know, but if you do, there may be something helpful here.

First, I join all of the other advocates, survivors and doctors out there that say Early Detection is so important. The age of 50 to start getting mammograms is a guideline, it isn’t a rule. If you feel like something isn’t right, have a family history, or want to stay in front of your good health, get a mammogram. Do it. Don’t make excuses. Do it. I know it sucks but do it anyway. Don’t have insurance coverage? Still do it. Organizations like Planned Parenthood help connect patients with resources for mammograms, biopsies and ultrasounds.

I was procedure shamed after I complained 3 years ago about pain in my breast. I was given a mammogram and an ultrasound, but the technician made me feel like an over-reacting hypochondriac. She told me, with annoyance and attitude, it was just a small cyst and not to worry about it. I felt so stupid. I ignored my growing symptoms over time because I was embarrassed to ‘bother’ someone again with my concerns. Finally I couldn’t ignore the pain any longer and two years later I went to UW this time for another mammogram and ultrasound. That ‘cyst’ turned into a large tumor with 4 other tumor friends in my breast and lymph nodes. So speak up, push back, stay tough, get a second opinion. I should have listened to my instincts and got a second opinion 3 years ago. I shouldn’t have accepted being treated like an idiot, I should have spoken up. Now here I am with one less breast and a ton of physical issues.

Just because you have cancer doesn’t mean you are getting chemo. Chemotherapy isn’t for everybody and every case. My point of this is that your treatment plan should be thoroughly discussed, researched and understood. There shouldn’t be a rush to treatment (depending on your case). Every situation is somewhat dynamic and your own research and your doctors should steer you towards the treatment path customized for you. My Oncologist at UW Hospital, Dr Stella has been excellent in working with me. We discussed my case, we discussed options and we decided together that chemo was not for me. We decided on the plan, and she continues to work with me on my residual issues and monitoring me. When it comes to your own situation it’s hard, but try not to make emotional decisions or decisions based out of fear. It’s also ok to get a second opinion.

Health overrules aesthetics. I really wish I had thought a little longer and harder about getting reconstruction. My Plastic Surgeon at UW did a perfect job of reconstructing my breast at the same time as my mastectomy. He did this in order to minimize trauma to me with my GBS residual symptoms. It looks good. However, I’m struggling with chronic pain partially caused by the weight and stress on my tissue. I was so concerned with looking the same I didn’t weigh the long term potential effects of reconstruction. I don’t think I even asked the questions about ‘what if I don’t’ scenarios. I should have. I may have arrived at the same conclusion but I wish I considered it a little more.

Project Plan your case. If you are the patient or the friend of a patient, life will be so much easier for everyone if you get organized. I set up a Facebook page for updates that could be interactive for my friends near and far. I set up an email list to send out milestone communications to family, friends and people not on Facebook. I recruited a local support team to help me with hospital visits, errands and food preparation. I also had a Project Manager (friend) help me set up and facilitate this. She also wrote a great Q&A post called ‘How was your support? An after cancer Q&A’. It contains honest,  helpful info for caregivers, friends and patients as I was through the tough stuff.

Drugs. Pain, Pain, Pain and Drugs. Sure there’s pain in the thick of it but I never anticipated I would have so much relentless pain after my surgery and radiation. I experience chronic nerve pain, radiation pain, angry tissue pain, and trunchal lymphedema pain. Why didn’t I anticipate this? I don’t think there’s enough attention towards the long term affects after breast cancer, and I wish I had done a little more research and asked more questions before I got rolling. The other issue is that I had been prescribed some nerve medications, Gabapentin then Lyrica as they are less addictive than opioids. They are also less effective and had miserable side effects on me like brain fog (ie: I was dumb), and one of the new nerve drugs nearly sent me to the ER after one dose with some crazy dizziness and nausea. Now before everyone gets upset I am not saying taking oxycodone is a good thing, but believe me when you are in pain and need some reset and reprieve periodically, I am totally OK with taking one. There is a well documented opioid addiction epidemic and I feel bad for those struggling with over-use. But from my research if the drugs are actually helping with…and this is crazy…pain…the likelihood of addiction is much less. If I have to take them long term in small doses to have an improved quality of life, then so be it. And yes I meditate, breathe, do my exercises, and have tried other homeopathic options. My point to all of this is to do the research, ask the questions and don’t be afraid to be entirely honest with your doctors about what is working and what is not. There may be some trial and error so be prepared to articulate what you are experiencing.

Insurance Companies can make things tough. Be prepared to spend a lot of time on the phone explaining things on repeat. Explain to them your needs and why, and have your doctors help you. I receive Occupational Therapy from UW Hospital. They have experience and are specialists in treating my pain, nerve damage and lymph-edema. My insurance company wants me to use their in-house OT team who do not have experience with these issues. Monty & I decided we are going to switch insurance so we can get OT from the experts. It’s that important. Be persistent, be patient and advocate for yourself. Don’t like their responses? Figure out how to get your needs met. With us it meant a change.

I also didn’t anticipate the side effects of my estrogen suppressor Tomaxafen, the drug I need to take for 5 years. I understand the importance of taking it, but I had no idea what it would do to me. I have issues related to early onset menopause, vaginal issues and weight gain. If you had a breast cancer that spread, there’s a good chance you’ll be taking this or a similar drug. And if so, there is also a good chance you may experience these and other side effects. Research them, and ask questions about them. Your upbringing, your religion or your values may make it uncomfortable for you to speak about intimate things, but it’s so important for your long term health and quality of life to speak up about them. Get comfortable speaking about your vagina, it’s OK, OK? Please, it doesn’t make you a bad person.

Know that people suffer beyond the obvious physical suffering. Going through treatment was a full time job for nearly a year for me. I was able to focus on that entirely, I had a supportive husband, and I didn’t have financial fears. Many people struggle financially with their everyday expenses, their relationships suffer, jobs are lost and they struggle emotionally. If you have a friend or loved one who is going through breast cancer treatment and beyond, they may have needs beyond their treatment. Just be mindful of that and lend a helping hand (or ear) where you can. Monty & I started a non-profit called Stepping Stone Foundation to raise money for breast cancer patients who need some help with their everyday expenses.

I also received some therapy from a UW psychologist specializing in cancer cases. I can’t express enough how helpful this was for my overall healing. She allowed me to express and understand my frustrations and well as provide me with at home tools such as imagery meditation. There is zero shame is asking for help.

Breast Cancer does suck. And dealing with it is stressful, and scary and I hope you don’t have to deal with it in any way. If you do, I hope this or my older posts help in some way. You have my support. Pamela