An Unexpected Development in My Mastectomy Prep Research

I'm having second thoughts about it. About having a mastectomy. And third and fourth thoughts. This is not because of vanity or general fears of surgery and post-surgery, although I have both of those. It is because the more I read about surgery-induced mets, the more I wonder if this is really the wisest choice.

Many women have mastectomies, never get recurrences or mets, and then attribute their good fortune to having had a mastectomy. But many other women have mastectomies and still end up with recurrences (in their chest wall) and/or mets. 

In some ways, I think that women with less advanced stages of breast cancer may benefit more from mastectomies than women with more advanced stages or women who are having a recurrence as opposed to a first-time cancer. 

My feeling about myself is that I am an "in-between" case. I was originally (more than four years ago) classified as Stage II because  I had one positive lymph node (which I believe was caused by the needle biopsy I had . . . or by the surgery itself). And although my recent PET scan showed no signs of mets, that doesn't mean I don't have any that were too small to be detected by the PET scan, which (if it's a REALLY good machine and great radiology dept.) might detect them as small as 4mm but often doesn't detect them until they are more like 8 mm or more.  Think about it. My MRI detected three distinct spots: 1/2 centimeter, 8 mm and 5 mm. But the PET scan did not show the 8 mm or the 5 mm.

What if I have a bunch of mets in my body that are less than 8 mm in size? That's entirely possible. In fact it's more probable, knowing that I DID have that accidentally detected 1 mm met in my endometrial lining. Even if that met got swept away by the D&C, there could be more.

If that is the case, maybe I would actually be better off if I just skipped the mastectomy and ramped up all my anti-cancer strategies, aiming to get rid of or reduce not only any potential hidden mets anywhere in my body, but also the cancer that I know is  in the breast.

Yes, part of the point of a mastectomy is "to quickly reduce the body's tumor burden." But maybe there are other ways to reduce the tumor burden. Actually, I am certain that there are other ways. But I would have to get savvier, and I would really have to come up with a good alternative plan.

That way I wouldn't be risking the surgery-induced mets. (And sure, I understand the psychology and the thinking: Just cut it out! Get the cancer out of my body! Take the damn breast, I don't want it anymore, all it does is cause me grief and fear. Good riddance! But even though I understand that - how could I not? - I don't know that I agree with it. That "reasoning" is not necessarily the most rational or safest. I'm just saying... there's more to it, and I need to ponder it some more.

I think that part of my decision will have to be based on how fast growing and/or aggressive the recurrence is. That's tricky to figure out, though, because biopsies also increase the risk of mets. How else can it be figured out, then?

Well, I'm thinking maybe another round of tumor marker tests in a month, to see if the numbers are going up, down, or staying the same. That would be one thing.

Another thing might be certain other tests that are less common (alternative type tests that I am just learning about now).

I've spent the last several hours reading parts of Jonathan Chamberlain's 400-plus page book on cancer. . . and thinking, thinking, thinking. About all things cancer-related, including the HUGE importance of reducing stress in my life.

I can tell you one thing: RUSHING and feeling that I must adhere to some deadline of "no more than a month or so" before having a mastectomy (and before I feel even remotely prepared for it emotionally or practically - ie. from a financial standpoint) is extremely stressful. People say to me, "Oh don't worry about running the Writing Salon, it can run itself for a while, and we'll help you!" with such well-meaning naivete. If it were so damn easy, I wouldn't be this worried and stressed about it.

I do a whole bunch of things that must get done. There is no one else here to do them. I am it. Yes, I appreciate the random offers of help, I do. But that's what they are: random, misc. offers to do things like sweep the Writing Salon floor. They are lovely offers, but . . .

Two-thirds of my WS work gets done on my computer, using knowledge that it would take me months to teach someone else to do. A lot of this job of owning and running the WS is contained inside my head. I can't just say to a friend (or teacher) who offers to help, "Oh yeah, please hire some new teachers and update the website for me." Or: "Please take over all the PR and marketing for three weeks. Just figure it out and do it." Or: "Handle all website problems and glitches that arise as soon as registration begins. And oh yeah, keep track of all the registrations, using the system I have developed that you have no idea how to use, which would require you to be on my laptop 90 percent of the the time."

I am not whining. I am not complaining. I don't feel whiney or complainey. I am just stating facts. For me to take off "a few weeks" or even to take off "half time" is not feasible unless I time and plan it meticulously. Only then could I do it in a SOMEWHAT unstressed way.

It's not a small thing. It matters. Losing even one month's income is big. Especially now with all the extra medical bills. My savings account could be wiped out in literally a couple more months, even with ALL my income coming in. In the last two days I paid out-of-pocket medical bills for $1,045.00, $254.00, $425.00, and $124. These are "extra" expenses, outside the norm of my usual budget. I can expect many more in the coming months. I don't feel even remotely interested in going broke, into deep debt, or bankrupt. No thanks. I need to work, need all my income.

Stress feeds cancer. Literally. Several weeks/months in a row of producing excessive stress-related corticosteroids can have the effect of making any existing cancer more aggressive and invasive.

Now, of course I would go ahead and risk all of the above if I felt confident and secure in my belief that a mastectomy would almost certainly guarantee me a better chance of longer survival (with the quality-of-life issue also factored in). 

But I don't yet feel that way. I feel conflicted about it. Really truly conflicted.

Oh Great Mystery of Life, Divine Life Force of my being, unto the Father and Mother within, come forward this moment, this hour, and walk in front of me, and help me do the right thing, say the right thing, in all that I face this day. So be it.
(And thanks for being there!)

Comments

[Jill]

I am so totally in agreement about stress and it's influence on health and well being! Always have been. It can be tricky to identify let alone know how to control it! Even "good" stress can be harmful at times....our bodies don't always know the difference. And everyone has their own individual stress triggers based on their particular personalities and life experiences etc. So, once again, only you can determine what your needs are where stress reduction is concerned. Maybe ultimately all we can rely on in "knowing" is our inner voices and instincts. We just have to keep listening to and trusting in them. I also truly believe that, at the end of the day, any of your true friends and family are going to be confident in and supportive of any decisions and choices you make for yourself without judgment. No need to stress over that one! At some point choices have to be made and anyone who knows you at all should be confident that you have exhausted all avenues in your search for answers for your life. Forgive our feable attempts at "helping" and let it go. Focus on what gives you more peace and calmness of soul for whatever is to come...

Love,

Jill

[Jeff Kennedy]

I'm trying to put myself where you are and think what I would do, but that can never be as real or as helpful as we'd like it to be. My gut that tells me to cut out cancer wherever and whenever you find it is informed by nothing really -- just my own deep, childish regret that my mother's cancer was diagnosed too late to have anything cut out (as if that would have cured it) though she still had to undergo surgery to place a rod to prevent a compound fracture of her femur. These decisions are horribly complex, and maybe the best I can do is just to acknowledge that. I wish I could be more help. You're often in my thoughts.

[harlan lewps]

I think Harlan has learned that inserting his unstudied opinion here only leads to torrents of angry replies from your faithful followers. Can't wait to talk about it all in person.

You are definitely right about stress. All it does is lead to more stress. Whatever it takes to diminish it pays huge dividends down the road.