… Or is it? When I was diagnosed with breast cancer 3 1/2 years ago, I learned that breast cancer runs in my father’s side of the family. I had never known this, probably because people in my grandparent’s generation never discussed such private body parts, um I mean, topics. Problem is, though, my father is an only child and men do not typically get breast cancer, so knowing the degree to which I might or might not be predisposed to breast or ovarian cancer was a bit in question. Was it a random fluke or was it an environmentally caused cancer? Was it my own body’s lack of sufficient immunity? Was it indeed a genetic mutation in my DNA? I think every woman who receives a cancer diagnosis yearns for that answer. It hangs over us like a dark cloud, partly because we think, perhaps, that if we know what caused our cancer we could prevent it from happening again. Well, as it turns out that may be partly true.
Women who test positive for the breast cancer gene(s) BRCA 1 or 2 are at a ten fold risk for breast and ovarian cancer over the general population. They tend to get these cancers under the age of 50, and they have a 50/50 chance of passing the genes onto their children. In the case of ovarian cancer, because there are no screening tests for the disease, by the time it is detected it is often in latter stages. With the advancement of technology it has recently been determined that additional women, initially deemed negative for the gene mutation like myself, can potentially test positive with a new test, called BART. ( BRCA large analysis rearrangement test) 3 1/2 years ago the genetic counselors told me that in years to come more advancements in testing would come available and this is beginning to happen now.
With my recent gyn ovarian symptoms and consideration for a hysterectomy, my oncologist recommended that I be tested. Today was the appointment for that test along with a lengthy counseling session with the geneticist. It was very educational and while the likelihood of a positive result being very slim, she has seen some surprising twists in other patient outcomes. It can have huge repercussions, so having the results is important to me. Not just for me, as far as surgical decisions going forward, but for my children, their children, my siblings and their children. Gone are the days when people were denied insurability based on genetics alone. Times are changing and some circles are realizing that knowledge is power and it is actually saving lives!!
While waiting for my blood draw I ran into a survivor friend. She also originally tested negative for the genes. She also is in a high risk category. When I told her what I was doing there she was shocked to learn of this new test for the first time and wants to see if it is something she should pursue as well. The problem with a statistic (which we often hear quoted) that only 7-10% of breast cancers are genetic, is that it is only based on those who <b>get</b> tested! If more women got tested would those numbers actually be higher? We won’t know until insurance companies agree to test more women and results are made known. In the meantime, survivors need to stay on top of the leading news in research and testing and press their doctors to advocate for answers to that burning question… Is it in my DNA?
Apparently I am! That’s what the dermatologist called to tell me today. The mole removed from my abdomen last week was determined to be Atypia, in other words, “pre-cancerous”, but the margins were clear. He wants me to be checked again in 4 months, 8 months, 12 months, then every year. (Thanks to my maternal grandmother and paternal grandfather, both of whom had numerous skin cancer lesions). The mole itself was only the size of a small pearl, but quite dark. Now I am left with what is sure to be a nasty scar, about the size of a large pea, but seeing as I have no intentions of wearing a bikini anytime soon, it is well hidden! If you really must see it, click here.
I have an appointment with my oncologist next week since the pain on my right rib cage area has not improved in almost a year and I have had continued bouts of tender swelling in my groin on that side for over a year as well. I have numerous sharp, tender “jabs” under my rib cage and towards my back each and every day. At times it is a take-your-breath-away pain, but it is brief and so I deal with it. I’ve almost become accustom to it, so much so that I have stopped all pain medications because they make me too loopy and I guess I would say that the jabs are tolerable (as much as one can stand being “slugged” in their side every day)! I’ll wait to see what tricks Dr. G may have yet left in his bag. I’m imagining the standard blood work, another scan, and another, “we can’t find anything” result but it is what cancer survivors do. It is the drill for at least 5 years, and sometimes beyond. As much as I would like to let it go, and decide once and for all that this is nothing to worry about, the fact is that I do worry and I feel very strongly that it is not normal. Fortunately for me, neither does my doctor, and he is on a mission to find it.
Summer is officially underway and next week at this time we will be graduating our last high schooler and attending college orientation soon. This same daughter plans on auditioning for American Idol in Pittsburgh later this summer as well. She can only take one parent with her. We’ll be fighting over that assignment!
Blood tests came back today. I did not test positive for the antigen necessary for me to participate in the San Antonio clinical trial breast cancer vaccine. I really had my hopes up – why else would I have been led down this path? That remains to be seen now. If anything I guess it goes to show that as patients it is really up to us to know what is out there in the way of cutting edge research and available trials. The doctors certainly aren’t focused on doing that across the board. I just really am at a very down place right now in all of this.
I am scheduled for a breast mri next Friday and then my oncologist would like to investigate further into why I am not getting relief from the pain in my side and wants to determine what that is. He emphasised again today that he does not want to give up on that. Personally, I am tested OUT, and scanned to the point of “glowing”. I’m not sure what more there could be but he has some ideas. I told him I want to get past next week’s mri first.
After getting today’s news, I got in my car and turned on the radio and here is the song that was on. Thanks God.
Today I saw a gynocologist at Walter Reed Army Medical Center. She had been in practice over 30 years. She was sort of that cold, hardened, brash type, well, you can picture her. (I do not mean any disrespect at all to our fine women serving in the US military.) But, with 30 years under her belt, I figured I was in good hands.
She, without even doing an exam wanted to tell me I should have my ovaries shut down (this due more in part, I suspect to my breast cancer history being positive for hormone stimulation), and I explained that my oncologist and I have discussed that and that was not the reason for my visit today.
I explained the pain I have been having since August and that it is on my side (rib area) and near my navel, and that my oncologist was able to find it precisely when palpating near the navel, and that
it is intermittent, but persistent, daily, and spontaeneous. She did an exam and told me she believed that I may have adhesions of the uterus but that the chances of them causing problems now 16 years after my last c-section was pretty slim, and that if that is the cause of this pain they would have to take the whole uterus and ovary anyway. Wait, but didn’t she just say she didn’t think that was the cause of this pain? I think she just wants my ovary! Maybe she keeps them in a jar on her shelf or something. Strange! Oh yeah, and then she proceeded to tell me to stop all coffee and diet cokes for a month and that may be the cause of this. Huh? Then she said that the pain on my side might be “gas”. I said, “For 4 and a half MONTHS?” Really?
Never once did she palpate the area of my pain. Only the area of the uterus and ovary, which doesn’t hurt at all. My oncologist had suggested an abdominal AND pelvic mri but this gynocologist only put in for the pelvic stating that gyn is her specialty. So I now have a message in to my oncologist to ask him if he might spare me a trip and put in for the abdominal mri along with the pelvic mri which is scheudled for the 12th of January.
Round and round and round we go – where this stops, nobody knows!
Today was my colonoscopy. This was after 2 straight days of not eating. Needless to stay I was a wee bit grumpy to start with. Up all night as the prep took affect, then fasting with no coffee this morning, but I made it and had looked so forward to having the answers I have desperately been seeking for 4 months. Why this pain in my abdomen? The nurse who started my IV got it going on the first try which was a first! Whew! Hard part down! I waited about 30 – 45 minutes and then they took me back to the room where they sedated me and performed the procedure. This is the same place I had my endoscopies in August and October recently, and according to them the same exact dosing of anesthetic drugs to sedate me. Well, that was a disaster today. I did not fall asleep, in fact I was relaxed and awake and screaming in pain for most all of the 27 minute procedure. At every turn in my colon I felt terrible pain. The doctor kept telling me it would almost be over, and for short periods the pain would pass but then he would have to make another turn. I just couldn’t believe it. I had never heard of this happening to anyone before. After I went back to recovery, the doctor came to speak with me and told me he didn’t find anything to explain the pain I have had for 4 months, nothing to biopsy, nor explanation for the pain during today’s events. He said that if I ever have to have this procedure done again he would recommend general anesthesia since he had given me the highest possible dose today and for some reason it did not do the trick. From what I understand, colonoscopies are not normally painful and so patients generally just dose off to sleep during them. So why so much pain in there? I hope to follow up with all of my questions tomorrow with my g.i. doctor and or oncologist. My g.i. doc was not the one to do today’s test, but maybe he has some ideas. I feel like I have reached a dead end in this pursuit and and I am very frustrated and exhausted from all of my searching and I am no closer to an answer. Only that when I searched on line I am NOT the only patient that this has ever happened to. It’s more common than I realized. I’m going to go eat some ice cream!
I am in Missouri this week, babysitting my 2 year old nephew and 5 year old niece. Ten days of stepping back YEARS in my own life of 6 a.m.wakeup calls and bed time giggles and story time.
The joys of childhood’s innocence! There is nothing quite like that wide eyed wonder of falling leaves, spider webs, starry skies and making pancakes!
Today we spent the day at a working farm with barn animals, a place we use to take our own kids 15 years ago when we lived here. A dry, sunny Indian Summer day, and perfect for our picnic too!
I captured lots of great photo shots (even showed my niece how to get a great pose! She took this photo of me) – and we enjoyed a visit with grandpa and grandma in the afternoon.
Even though this is an exhausting pace,it is a wonderful change of pace, and one that I am thoroughly enjoying! Read more below…
Although I am on a bit of a working “vacation”, I am ALWAYS in the fight against breast cancer, and reading, researching, and collecting all of the information that I can.The month of October has no shortage of resources! Click on this link or directly on the video at the bottom of this page to listen to what Dr. Susan Love has to say about where we need to go now in our fight, and how the pink ribbon awareness campaigns of 25 years have worn out their welcome….what we need now is to END breast cancer.
I was asked tonight (by a woman I met), “So are you cancer free now?” I’m sure a lot of people wonder that about those of us who have had cancer and the straight up answer is, I hope so!
“No evidence of disease, or NED, is the new ‘remission”. But there is no cure for cancer and a certain percentage of cancers will recur, and nobody really knows if it will happen to them. Statistics get thrown around, charts and studies would conclude that the odds are in my favor of remaining NED, but there are no guarantees as we would all hope for. Such a guarantee is just out of reach. If it were, then I could stop thinking about it on a daily basis and we could all just leave Cancerland behind us.
I woke up the other day and thought to myself, what if I just didn’t talk about breast cancer anymore. What if I stopped going to support groups, stopped visit the oncologist, stopped hanging out with fellow survivors for coffee and lunch dates, WHAT IF I JUST QUIT CANCER? Maybe THAT is what would get me to move further along up the road. I’ve learned of plenty of people who did just that. They never spoke of it again, and they went on in their lives and stopped identifying themselves as survivors. But then later in the week I was working the volunteer hotline and took a phone call from a woman who has stage 4 breast cancer which has spread to her bones. She really needed someone. I found it hard to relate to a lot of what she is going through, but then we found the common bond of our faith, and it was there that I realized my BEING here in Cancer is for women like her. Women who need a ray of hope. A hand of compassion. There is a sisterhood here that few can understand. I know that when I was in my darkest hour I needed the survivors whom I met and became my friends. I needed the help of those who had gone before me and came out the other side, happy and healthy. I needed them like others need me now and so I guess I won’t be “quiting” cancer anytime soon.