Breast Cancer Treatment - Things the Doctors Don'

I started chemotherapy about two and a half months after diagnosis (because I had surgery right away, a lumpectomy, then I had to pack up my house and move across country -- a job transfer that came about just a couple of weeks before my diagnosis). I received AC (adriamycin & cytoxan), also known as "red death" first. I was warned about the usual side effects, such as nausea, hair loss, fatigue. When they told me I would be fatigued I though, "I have two kids under 3, I KNOW FATIGUE, no big deal." I could not have been more wrong - fatigue from chemo is nothing like the fatigue of having two babies 18 months apart!
The decision whether or not to go through radiation therapy is a whole other story. Suffice it to say I did receive radiation therapy. It's five days a week, which is the only difficult thing about it. What was difficult is what came after...
Just when I though the cancer "treatment" was over, more problems got piled on to my plate and the journey continued. I truly hope this information helps other cancer patients. One of the main lessons I have learned is to seek second opinion, and third and fourth. Especially when strange things start happening, like unexplained rashes and such. Not all doctors know everything. The saga continues... you can read more details about my saga and where I'm at now at the link below.
The first thing I learned around this time which I had never been told about: WEIGHT GAIN. I always thought/assumed chemo made people loose weight. After all, that's what you see in the movies, right? I had a small hope that at least if I have to go through this hell, I'd finally take off those last remaining pounds of baby weight. I could not have been more wrong. I asked my doctor why I was gaining weight. I was told that is true that weight loss is associated with most cancers -- OTHER than Breast Cancer! Great! Wham - I'm 30 pounds heavier with no clothes that fit me and a huge disgust for myself and my appearance. Do I really need to have body image issue on top of it all? No. Apparently the weight gain is from steroids that they pump into you with the chemo to help with side effects and chemo makes your body basically go into menopause - or "chemopause" as some call it - which involves a slow down of metabolism and, thus, weight gain!
The second thing no one told me to expect: after the initial few weeks of recuperation, I would not look anywhere near normal. I thought I'd have the surgery, heal for a few weeks and then have a flatter belly and nice, new, perky boobs. Wrong! I had (still have, 6 months after surgery) new pouches of fat on my hips where the hip-to-hip incision was placed - I was told is was due to the skin being pulled down and reattached together. "Don't worry", my plastic surgeon says all the time, "I'll fix anything that's not perfect". I believe him (mostly because I will MAKE him fix me)! Also, the boobs are not so perky and they kind of wrap around to my side a little - ew! Again, he says he'll fix anything that's not perfect. Ok, and I'll hold him to that, but why the hell didn't he, or his staff, tell me what to expect. Sure, I could have asked more questions, but I had no idea what to ask!
The only reason they wouldn't redirect is if you; a) Nailed it or b) Failed miserably but you will never know which of these is the case. If they do redirect you, they will provide all the information you need to fill in the gaps and they will point out anything you might have done that they didn't like and likely answer all the questions that you were going to ask in the first place but now you are warmed up and ready to go...3. Don't worry about the words.Too many actors make too much out of the words. Look, you've only had the script for a few days and it may have been written the day before without any time for proofing and the writer may not even remember what he wrote or the lines may have already changed since you got the sides so...DON'T GET HUNG UP ON THE WORDS! You're there to create a character and deliver a performance, not recite words from memory. Actors for some reason think the opposite...maybe because their acting teachers or others have told them they are so important.
I am 38 years old and was diagnosed with Breast Cancer 14 months ago: Invasive Ductal Carcinoma, stage 2, one positive lymph node (sentinel lymph node), ER/PR+, HER-2 -, BRCA2+. I have completed chemotherapy, had three surgeries, radiation treatment and have been to hell and back. When I was diagnosed, I was told that I could expect a difficult year to come. That's it - difficult. Not many details, and certainly no one informed me of potential side effects or complications. It has been a frustrating road, but I'm seeing a light at the end of the tunnel now, 14 months later.
Yes, on the set the script supervisor may mention it if you get some words wrong, but generally the words are far less important than the story and emotions that you are conveying. In my most recent reading session, several actors stopped themselves in the middle of their performance (that otherwise was going well) because they forgot one word, so rather than making the whole thing seamless and ride it out...they halted the entire performance and either asked me for the line or asked to do the scene again. People...just be the person, not a reciter of words. That is what acting is...filling in someone else's shoes for a few moments... To prove my point, in a recent session, several times the producer mentioned that one actor or another was 'respecting the text too much'. She didn't even know what the lines were...it's not like she was following along...she was watching the performance and the only way even the writer is going to notice that you blew a line is if you draw attention to it yourself.
The third thing no one bothered to tell me: A lot of cancer patients, due to weakened immune systems, develop Shingles. Had I been told this, I would have sought medical attention right away when the sore spots in my armpit began to welt! I thought it was just my radiation wounds healing - so did my Oncologist. It got worse. I began getting what seemed to be bites down my arm to my elbow - they itched like MAD! I got on the computer one night at 3am and went back to bed around 5am convinced that I either had bed bugs or scabies! A week and a half later I saw my Radiation Oncologist for a follow up and she took one look and immediately told me I had Shingles. I was relieved it wasn't scabies! I had no pain, just itching so I thought it wasn't too bad. She started me on medicine and I started researching. I found out that Shingles is best treated when you start the medicine within 72 hours of the rash showing up - DAMN! See? Had someone somewhere along the road told me of the possibility of getting Shingles I'm convinced I would have sought treatment for them right away. Now I've had them for 6 weeks and it has been a horrible, horrible experience - they itch enough to drive you mad - really, truly, insane mad! That's not even the worst of it - I woke up one morning after about a month of having this rash and my body hurt all over and I had swelling in my armpit the size of a tennis ball. I went to the ER and ended up confined in the hospital for a week with a bad Staph infection!
Well, I survived chemotherapy, thirty pounds heavier. Next step was more surgery. Since I had my initial surgery so quickly after diagnosis because I had to pack my home to move, I results of my genetic testing had not yet been received. The results ended up being positive; I carried the BRCA2 gene mutation. This meant I had a high risk of recurrence in the same breast AND in the other breast. I was also at a high risk for developing ovarian cancer. Thus my decision, after moving and after chemotherapy, to undergo a bilateral mastectomy and reduce my risk of recurrence by 95% - 99%. I also decided that I would eventually have an Oopherectomy to remove my ovaries & tubes. That decision was a no-brainer, since Ovarian cancer is known as the "silent killer" because it's often not detected until it is late-stage. I had my two beautiful daughters and had my tubes tied after the second because I knew I didn't want more than kids. So about five weeks after chemo ended, I underwent surgery. I chose to have the bilateral mastectomy with immediate reconstruction using fat/tissue from my abdomen (tram flap). My plastic surgeon had told me that if there was any chance I would be receiving radiation therapy, he would not give me implants, so I went with the tram flap option.
I am no expert, nor am I a doctor. Just a cancer patient wanting to help others in my shoes....