Photo: Odin the tiger dives in to eat his lunch (a new kind of 'tiger shark'?)Yes, doubts of whether I really needed a complete (total) mastectomy of my left breast
And why am I now saying this after months of extensive research, etc, etc ?
Well, after all these months of activity, research and decision making it’s like the dust has somewhat settled and I’m able to see a bit more clearly. Had time to reflect on a somewhat still surreal happening in my life.
You might remember back just after the surgery when I was very worried about the pathology report because it was taking a longer than normal and I was concerned if there could be bad news.
Well, it was, as we know to the contrary (yay!!). I found out the reason it was delayed was because pathologist could only find healthy breast tissue, he could not find any evidence of disease, NO cancer.
He also couldn’t find the original biopsy site. So he told the surgeon he was going to do another round of looking and this is what delayed the report. The second time around he did find the biopsy site. He found a solitary focus of ductal carcinoma in situ (DCIS) with a solitary focus of atypical cells. The amount of cancer found was so tiny that they couldn’t even do a standard test to see if the cells expressed a certain cancer protein.
The site of the DCIS was a very small growth called a papiloma. Most of this papiloma was removed with the initial biopsy last October. These growths are benign. But for some reason sometime later this little papiloma started to have cellular changes. Would it have turned invasive? Really unknown but there is a 30-40% risk that it could have.
I had a fleeting sinking feeling of “oh no” when I first saw the pathology report, maybe I was too radical in having my whole breast removed.
I know that having a report with no invasive cancer was the important thing! That was a massive relief!! But, still, you want to get the treatment options right and individually suited to your particular diagnosis.
So how did I get to the decision to have a mastectomy? Here are some of my thinkings.
Statistics. These are important to factor in and I researched them thoroughly. But with the perspective I have now I know the bottom line is to consider the individual first.
We each have a unique set of circumstances. Statistical evaluations can give you a good idea of probable outcomes but there are many variables, extremes and gaps. Yep- gaps. Or holes. The ability of the mind and body to change outcomes is actually phenomenal. Black numbers on white paper is one thing but the healing ability of our mind and body is truly amazing. This might not make sense but I’m trying to point to areas where statistics don’t look at or are not even taking into consideration. I think this is a bigger conversation for later.
What I do know is that when you first get a diagnosis of “BREAST CANCER” it’s such a blow or knock to the psyche. And the first thing you want to do is live. Whatever it takes. I know I was considering the worst case scenarios with the diagnosis I had. I didn’t want to die and mastectomy has a 98% cure rate with DCIS.
Advice from others. Just mention the words breast cancer to anyone and you will almost certainly hear of situations people have experienced with this cancer. Many of them with very sad outcomes. Ahhhh!
In learning more about breast cancer I have learnt that it is not an immediate death sentence. Survival rates are getting better. And remember I did not even have a lump. Just teeny tiny cells that had mutated, and that could only be picked up by a mammogram. But when you have a fresh diagnosis of breast cancer and are completely new and unprepared, you are quite vulnerable and impressionable. Potential freak out time. I’m only 41 and I might die of this. You will do whatever to live.
My refusal to have radiation treatment which is recommended if one has a partial mastectomy to decrease chances of recurrence of cancer (but radiation is not needed with a mastectomy unless invasive cancer is found near the chest wall). I knew I would not expose myself to seven weeks, and five times a week to high dose radiation directed at the remaining breast tissue that would be left over from a partial mastectomy (lumpectomy). No way. Not me. After meeting with a radiation oncologist this made me even more convinced to forgo this therapy. Well, like, there were just a few minor details like possible heart damage, lung scarring, fatigue, skin burn. And, oh, wasn’t there something about radiation causing cancer?
And, how about long term studies for people in their 40’s after radiation therapy. Like, what happens down the road after 20, 30, 40 years after radiation exposure?(!) Well, there are none.
I know I tried really hard to “get it right”. Well, what is right? A very difficult situation with difficult decisions, that’s for sure. You don’t want to be left with, “Oh dear, I made the wrong choice and I have only one breast now”. You can’t ask for it back and have it sewn back on.
What can I say? The dust is still settling and maybe this is all just part of the process of acceptance and I will have more clarity in a few weeks. I’ll let you know.
