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The path of least resistance June 12, 2015

Posted by Judy in Sewing projects.
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I’ve always been fascinated with the way water moves.  It just flows and bubbles and gurgles along, generally taking the path of least resistance.  I sort of think of water as being practical, not working too hard to break through dams and blockages.  Instead, it just meanders to another spot where there is less resistance and keeps on flowing.

My healthcare for the past 18 months hasn’t been very practical, taken the path of most resistance.  (Is that even a saying?  Probably not.  I think I just made that up!)  That’s going to change next week, though.  Next week, I’m taking the path of least resistance.  Some of you have asked what I’ve decided to do about the impressively large fibroid that’s taken up residence.

I’m taking the path of least resistance.

While a full blown hysterectomy would take care of the fibroid, it would also wreak all sorts of havoc, upsetting the applecart, forcing me to amend my plans.  And I have plans for this summer.  Plans to paint and build and design and garden and customize our house.  Plans that I’ve been working on for five months.  I’m not willing to give up those plans or put them on hold.  “But wait,” you say, “why can’t you just do the surgery after your plans have come to fruition?”

Because I’m taking the path of least resistance.

Having the big surgery would mean weeks of recovery.  Weeks of being unable to do projects with the babes.  Weeks of being “not quite myself”.  Weeks of not being able to wear the 2.5 year old.  And yes, I still wear my youngest in a baby carrier.  I hear the words, “Mommy, be carrier with you.” every. single. day.  I sort of thought we’d be done with the daily wearing by this point, but the Little Boss doesn’t agree.  He’s always been my super velcro baby supreme, so I shouldn’t be surprised.  He has, however, been extra clingy the past few months and most of the time, I’m the only one that is good enough.  It’s exhausting, but sweet all at once.  It’s pretty clear to me that babywearing is still important for him.  In many ways, I think it’s more important to him than nursing was.  I’m not willing to take that away from him.  While he was a trooper with the speed weaning, I’m not sure he’d fare as well with a sudden moratorium on being worn in a carrier.

Hence, I’m taking the path of least resistance.

Having major surgery would be another big change to add to the big changes resulting from the past 18 months.  The difference here is that this change isn’t strictly necessary.  I’m not going to die if I don’t have a hysterectomy.  Death could have been a very real possibility, however, if I had chosen to not have breast surgery.  Whether or not to have surgery was a decision that had to be made “right now or else”.  The pressure to make the correct decision was huge, yet I only had a short amount of time to contemplate the options.  The pressure to deal with the fibroid was also huge, until I realized that it was self-imposed.  Now that I’ve stepped back, I see that this isn’t a decision that has to be made immediately.  It isn’t a life or death decision . For the first time in over a year, I have full control over the when and how of my heath.  That realization is empowering.

And so, I’m taking the path of least resistance.

Having the fibroid embolized will likely not be a panacea.  I’m okay with that.  My hope is that the embolization will buy me time.  It will be a stop gap measure to get me through this summer.  To get me through to the end of the Little Boss’s babywearing days.  To get me through a year of relatively good health.  (I say a year since I’ll be revisiting the “to operate or not” issue again next summer.)

But for now, I’m taking the path of least resistance.

Next Wednesday is probably going to be awful.  The doctor made it very clear that this will be painful, but only for a day or two.  I can handle that.  I mean, come on, I’ve given birth to four babies, this can’t be worse than that, right?

I’ll just meander on over and take the path of least resistance.


To operate or not May 17, 2015

Posted by Judy in Musings.
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I need to pick your brains, my trusty blog followers.  I need to make a pretty big decision in the next few weeks and, as with the mastectomy surgery decision, I’m kinda going crazy!  But first, here’s a bit of background info.  You may remember the fibroid that was “discovered” during my CT scan back in December of 2013.  I say “discovered” because when the medical oncologist was all “Whoa!  You need to get that looked at!”, I was all “Um, I already knew about that, it’s no biggie!”  Well, it’s becoming a biggie and causing all sorts of problems.  Actually, I’m not positive that it’s the root of my heartburn problem, the weird random pains in my side and my intestinal foolishness, but it’s large enough that I’m willing to bet it is the cause.

I’ve spent the past 2 or 3 months talking with different doctors to get my options sorted out and I’ve come up with two options:  uterine fibroid embolization and myectomy/hysterectomy.  (Although it seems this has nothing to do with breast cancer, it’s actually tangentially related, which is why I’m sharing it here!)  I’ll give some brief explanations of the two procedures.

Uterine fibroid embolization (UFE) is a minimally invasive procedure where a catheter is inserted into the femoral artery, and then tiny pellets are injected to block the uterine arteries that are feeding the fibroid.  The uterus is resilient, so it will figure out a different way to get blood flow.  The fibroid, on the other hand, will slowly necrotize and shrink roughly 40-60%.  The procedure requires an overnight stay in order to help manage the pain (which is apparently quite intense), and then you go home the next day and pretty much go about your business.  What this procedure does not do is completely get rid of the fibroid, it just reduces the size, but it’s very successful in helping to do away with many of the symptoms.

The myectomy/hysterectomy surgeries are not really minimally invasive.  A myectomy is the removal of just the fibroid.  A hysterectomy is removal of the uterus, plus any of the following:  ovaries, fallopian tubes, cervix.  Both of these surgeries can be done either laparoscopically with a robot or with a large vertical incision in the abdomen.  The robotic surgery would result in three small incisions in the abdomen, and would require roughly 2 weeks of lifting restrictions and an overall shorter recovery.  The one downside is that due to the size of the fibroid, it would take a fair amount of time, 3-4 hours, to cut it up and remove it through the small incisions.  Doing a traditional hysterectomy with the large abdominal incision would be much faster, about an hour and a half, but would require 6 weeks of lifting restrictions and lots of recovery time, because it’s major surgery.  Unlike the UFE, both of these procedures would completely remove the fibroid.

So I should take a minute to discuss why this fibroid is a problem and needs to be removed.  After all, many fibroids are asymptomatic and can just stay in place.  In fact, I’ve had this fibroid for a long time, probably 5-8 years without any problems.  So what’s the big idea now?  Well, it’s enormous!  Seriously, it’s like I’m 3 months pregnant because the fibroid is the size of a small melon!  I had an MRI done of my abdominal area two weeks ago and we were able to see those images this past week.  I wish I had them to share with you, as the fibroid is really quite remarkable.  If you are looking from the side, the fibroid fills the entire space from my abdomen to my spine.  When seen from the front, it takes up a third of the space from left to right.  The top to bottom measurement is the largest, measuring 5 ½ inches.  This means that the top of my uterus is just above my belly button.  That’s not where it’s supposed to be, unless you are pregnant!  Keeping in mind the fact that I’m 5’1” with a VERY short torso, this fibroid is basically taking up most of the space in my abdominal cavity, meaning that anything else that is supposed to be there is squished.  Heck, they couldn’t even find the left ovary with the MRI because it was so squished behind something!  So yes, something needs to be done.  The question is, what?

I like charts, so I’ve made one with the pros and cons.  But before I share the chart, you are probably wondering what in the world this has to do with breast cancer.  I am currently taking an anti-estrogen medication called Tamoxifen, and I’ll be taking it for another 4.5 years.  The purpose of the medication is so suppress the amount of estrogen so that in case there still is cancer floating around my body, it will have fewer places to attach itself.  Here’s the rub:  the drug works as both an agonist and antagonist towards estrogen.  The estrogen in breast cells is treated antagonistically, or suppressed.  The estrogen in the uterine cells are treated agonistically, or enhanced.  See where this is going?  The drug I’m taking to help prevent the return of breast cancer is making the fibroid grow.  Nice, right?

The other way this is related to breast cancer is because of the ovaries.  If I choose to have a hysterectomy, the question of whether or not to take the ovaries needs to be addressed.  Generally, they don’t need to be taken.  But, it might be wise to have them removed since they are biggest producer of estrogen and removing them would further reduce the chance of a recurrence.  Estrogen is still produced in other parts of the body, so I’d still have to take drugs, but it would be a different drug called Arimidex, which is an aromatase inhibitor.

Okay, here’s the chart.

Procedure Pros Cons
UFE Minimally invasive Doesn’t get rid of the fibroid
Quick recovery time, just a few days May or may not alleviate the symptoms
Relatively low risk
Done under moderate sedation, which means no intubation
Myectomy/hysterectomy Completely removes the fibroid Major surgery which requires intubation (LMA is not an option due to the position one is in during the surgery)
Robotic/laparoscopic Shorter recovery time, 2-3 weeks Longer surgery = longer intubation (3-4 hours)
Only 2 weeks of lifting restrictions There’s no guarantee that this size of a fibroid can be treated laparoscopically.   If it’s too large, they’ll have to switch to the traditional hysterectomy
Traditional hysterectomy Shorter surgery = shorter intubation (1-2 hours) 6 weeks of lifting restrictions, which means no babywearing for the 2.5 year old, who is REALLY into that now.  He already had to be weaned early, not sure I want to “wean” him from wearing early, too.
Long recovery time 4-6 weeks
Ovary removal Greatly reduces the chance of breast cancer recurrence Would require a change in medication.  Right now, Tamoxifen is great, I have no side effects.  Who knows if that will be the case with Arimidex.  I could be swapping one set of problems with the fibroed for another set with the meds (hot flashes, joint pain, sore throat, nausea, vomiting, numbness/weakness in hand/wrist, etc.)

I think I’ve thought of all of the pros and cons, but maybe a fresh set of eyes on the situation will reveal more.  The other thing to consider is if I do the UFE and the results are not satisfactory, I can always opt to go the surgical route.  If I do surgery off the bat, well, there’s no going back from that.

And one more thing . . . .when am I going to catch a break?  I’m so done with doctors and health drama and foolishness.  I want to be healthy again.  That’s not too much to ask, is it?  I’m just gonna go sulk in the corner while you all contemplate a solution to my current dilemma!

Exploding February 23, 2014

Posted by Judy in Musings.
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That’s what my brain has been on the verge of doing for the past two days. My brain is swimming with so much information, and the pressure of having to make such a difficult decision in a short amount of time is about to make my brain explode! One minute I think I’m close to making a decision and the next minute, I look at it from a different angle and I’m back to square one. So I’m back with another post asking for your help. I know that many of you aren’t comfortable giving your opinion for such a big decision, and many have said that you don’t feel qualified. Here’s the thing, I’m not looking for a professional opinion. I already got that from my doctors. Right now, I’m looking for the opinions of you, my friends, those who know me, those who have gone through similar experiences, those who have never experienced anything like this. I want to know your thoughts.

I met with my medical oncologist on Wednesday and based on the information we got there, it would seem that the Grim Reaper is no longer knocking at my door. He seems to have moved on for the time being. Hubs and I have taken the new information, mashed it up with the older info and have been spinning it around and around, left and right, end over end trying to find an answer, but to no avail. We have come to the following two conclusions:

1) The surgery decision is going to be made mostly based on our own thoughts and less on the doctor’s recommendations because they are seeing things from a very different perspective. We weren’t comfortable making a final surgery decision by Tuesday, so I’m canceling the re-excision and we are going to get a second opinion at Mayo Clinic this week.
2) We should get a second opinion regarding a post-surgery treatment plan. We learned that there’s a standard of care that most institutions follow for chemo, so getting a second opinion for that would be less helpful.

Let me catch you up on the new information, and then I’ll look at each of the surgical options.

  • The tumors are fast growing, but not to the point where I needed to have started chemo yesterday. We have time to get the surgery right and to carefully decide on a chemo plan.
  • With a mastectomy, I won’t need radiation because I have fewer than 4 lymph nodes involved and my tumors are all smaller than 5 cm.
  • If there are other tumors hiding out, and I choose a re-excision, radiation should take care of those tumors. I’m not really sure I trust that information, though. Not that I think the doctor is lying, I just don’t trust it.
  • The fact that one tumor was right up against the chest wall doesn’t worsen my prognosis. Anything that is left over near the chest will be blasted with either chemo or radiation. Again, I’m a little skeptical about this bit of info.
  • Lobular cancer tends to be more likely to produce tumors that pop up everywhere than it’s more popular counterpart, ductal cancer.
  • The her2 status of the tumors is up in the air. The biopsy showed it was her2 negative, which was good. Once the entire tumors were removed, the testing results were on the fence between positive and negative. The chemo plan is very different for each, so it’s important to know which way it is leaning. The doctor is ordering a “fish” test which will tip the scales (no pun intended) one way or the other and those results should be in within the week.
  • The oncologist feels that all of the information on the pathology report points to this disease being very treatable.

The three surgical options are re-excision (breast conservation, aka BCT), single mastectomy and double mastectomy. I have been applying the following measures to each of the options: vocal preservation, radiation and peace of mind.

Vocal preservation is probably the single most important measure. My vocal cords are so hugely important to me, I’m not sure that I can even put it into words. If my cords were damaged in surgery such that my ability to sing was compromised, I would be utterly devastated. Some surgeries are conducive to the use of LMA (laryngeal mask airways), while others require intubation. In terms of preserving the vocal cords, a LMA is going to provide the best outcome as it sits atop the cords rather than going in between the cords. I would think that minimizing the number of necessary surgeries would then minimize the possibilities that intubation would be necessary, thus minimizing the possibility of vocal cord damage.

Radiation is probably the easiest part of cancer treatment, but it’s still rather toxic. Technological advances have made it possible to really fine tune where the radiation is going and to cut down on the amount of damage to “bystander” organs. This is especially important in my case since I have positive margins on my chest wall, which is near the heart.

Peace of mind is something that oftentimes isn’t discussed in the office setting, but I do think it is important. In my case, peace of mind has two components: survivorship and recurrence. Everyone wants to know if they will survive the disease. Interestingly, the survivorship rates are the same for all three surgical options. (Although, there was a lit review published in 2013 stating that evidence does not clearly show that women under 40 have the same survivorship between BCT and mastectomy.) Recurrence rates, which measure the likelihood that cancer will return, either in the breast or to distant places in the body, are also tricky when looked at in younger women. Some studies showed that recurrence rates were very similar while others showed there was a marked difference.

This is the chart I drew up to help me see how everything came together.

BCT – lumpectomy single mastectomy double mastectomy
Vocal preservation LMA LMA LMA? Intubation?
Radiation yes no no
Peace of mind – recurrence 14%19% 16%6% no information
Peace of mind – survivorship 10 year – 84%15 year – 77% 10 year – 84%15 year – 79% no information

With both BCT or a single mastectomy, I would very likely be able to use a LMA. The surgeon’s nurse practitioner wasn’t able to answer whether the longer double mastectomy surgery would be eligible for LMA. If I had to be intubated, it really wouldn’t make sense to do that surgery since then I’d be using intubation to avoid intubation. But, if I could still use an LMA with a double, then it would be a no-brainer based on that measure.

The radiation measure is pretty straight forward, for the time being. I’m assuming that I won’t need it if anything is cut off. But, I’ll be meeting with the radiation oncologist on Monday, so I’ll be asking if the positive margin on the chest wall dictates a need for radiation regardless of the surgery.

Peace of mind is the really tricky measure. As far as survivorship goes, it’s a non-issue since it appears to be the same, or at least that’s the best data available right now. The recurrence number is the murkier one. If the difference really is only 2 percentage points between the surgeries, that amount is trivial. But 13 percentage points is getting close to being an amount that actually matters. So which one is it? Who knows!

I suppose the real problem here is a lack of definitive information. Some of the gaps in info can be easily filled in by talking to the appropriate doctors. Other gaps, like in the recurrence category, are going to remain ambiguous, thus making the surgical decision much more complex. This is partly why we are heading to Mayo to see if they have any other ways to provide me with the best outcome while optimizing the above measures.

ETA: I started this post on Thursday. When you are mulling things over and over and round and round, things change quickly. At this point I’m not mulling things over as intently, but given the fluidity of the situation, I’d still be happy to have you share your thoughts!