Imaging/chemo/surgery update

Had some imaging (mammogram and ultrasound) done on Monday.  And some re-imaging, and then some more, just to make sure the radiology docs got all the info they needed.  I’m finding time and again that I have a very popular and interesting tumor 😉  It’s also not any smaller after 9 rounds of chemo 😦  That’s not great news…BUT the tumor does seem to have changed in consistency (there is a decrease in dense tumor tissue and an increase in a more fluid-like substance they are thinking/hoping is made up of necrotic tumor cells, but they really don’t know because they haven’t seen anything quite like this before…).  It’s like the tumor is melting but still contained within the original tumor wall instead of draining, which sometimes does happen.  The other good news is that there is no indication of continued lymph involvement (though a biopsy or removal is really the only way to be sure, at least the nodes look normal overall).

The surgical oncologist was dismayed by the lack of change on the size front and suggested immediate removal of the tumor.  The medical oncologist wants to continue with chemo (either the current study protocol with the paclitaxel/carboplatin/veliparib cocktail, of which there were three more treatments as of Tuesday/yesterday, or skip immediately to the doxorubicin/cyclophosphamide and come off the study).  I was hoping for a mud wrestling match to determine which doctor wins the surgery vs. chemo debate, but that’s doesn’t look promising.  The medical oncologist will be discussing my case and this new information with the UW Health ‘Breast Cancer Panel’ early next week, so we’ll get a collective opinion on how best to proceed at that point.  I was on board with getting that day’s chemo dose and waiting one more week to see if a consensus was reached, as long as it didn’t appear as though the cancer was spreading into the lymph nodes or chest wall.  We talked about the possibility of getting an MRI just to see if it gave us anymore diagnostic insight into the behavior or potential spread of the tumor, which was supposed to be scheduled for this week.  The study coordinator put the kaibosh on that, however, because she said it goes against study protocol to have an MRI before the last dose of paclitaxel (which would mean waiting 2-3 weeks).  I haven’t written much about my ongoing frustrations with the limitations placed on my treatment as a result of this study, and I have tried to remain a good research participant, but this might be the last straw.   I’ll update again once we get input from the other boob docs.

Met with the surgical oncologist last week Friday to touch base and talk options.  Surgery is tentatively scheduled for July 1st, which is about 4 weeks after my last chemo treatment (assuming the schedule stays the same, which it might not now…).  It was a sobering visit, not because there was any bad news necessarily, just the realization that there is a long way to go on this journey and it’ll get harder before it gets easier.  I’m starting to plan for the 4-6 weeks it will take to recover from surgery (average projected time…I’m aiming to be up and at ’em sooner!), so a post will likely come in the near future about ways peeps can help during that time if they are so inclined.  It will likely be the most difficult time for me out of all the treatment phases because I will lose a lot of independence and the ability to do many of the daily tasks I take for granted now (anything that requires the use of my arms from the shoulder to the elbow is out…I’ll have all the functionality of a t-rex for several weeks).  I’ll need to dig down to find patience and strength, and lean on friends and family to do the same.  Hope you are all on board 🙂

My options for surgery haven’t changed much…  I had hoped that since my genetic testing came back negative, it might mean I would have a better chance at saving the right breast and just have reduction on that side to match the left.  But, since I was diagnosed at such a young age, just having breast tissue present increases the likelihood of a new cancer taking hold (cumulative .5% chance each year of my life moving forward…if I live to 80 that would mean 20% chance…not good odds in my book!).  Now, interestingly, survival rates with a second, unique diagnosis do not change much, meaning that treatment is generally successful (and early diagnosis helps…I would be getting mammogramed or MRIed every 6 months for the breast of my life), but hearing the words ‘you have cancer’ are not ones I ever want to hear again.  Like, ever.  Cancer: we are never, ever, ever getting back together (HA!  Now that horrible song is stuck in your head like it is in mine…so evil!).  If my reduction on the right side included approximately 50% of the breast tissue present, I would cut the chances of a new cancer emerging by half…a 10% probability of losing the cancer lottery is not much better than 20% in my mind.  So, looks like we’re back to square one.  Mastectomy for sure on the left side.  We could: do a double mastectomy from the start and just get ‘er done (with or without reconstruction down the road…both still on the table), or do nothing on the right side now and chop it off later (one less surgery on the right side now, but means having to wear a prosthesis on the left for quite a while), or opt for some other plastics procedure up front and have one less reconstructive surgery on the right later, or even still do a breast reduction on the right and have a mastectomy and reconstruction down the road in a few years before the odds of growing a new tumor creep into the uncomfortable zone.  There are many now and later scenarios, too many to describe here, but you get the idea of the choices I’m facing.

On the bright side, though, here are some reasons I am looking forward to my mastectomy with new, smaller boobs:

Yoga.  There are several bending/twisting poses I simply cannot fully realize because the boobs get in the way.  I cannot even lie flat on my stomach in the same way most people can, which limits other poses (half locust, here I come!).

Running.  For those of you that have not had the experience, well-endowed women have the extra burden of lugging around two large, bouncy, painful-when-jiggled-for-long-or-even-short-periods-of-time, orbs in a bodily location that is center-of-gravity-inconvenient when it comes to running.  Ain’t no sports bra that can contain the ladies in a way that prevents boobache during and/or several days after a run (and I’ve tried doubled-up compression, state of the art fancy and expensive versions that make big promises but don’t deliver, you name it).  Now for the first time in my breasted life, I can (hopefully) enjoy this form of exercise.  No more excuses for not jogging/running, though…

Fitting into ‘off the rack’ clothes.  Can’t wait to be able to buy dresses, swimsuits, and even just shirts that fit passably well without having to buy two sizes higher to fit my boobs while the lower portion looks like a tent, or vice versa when the bottom part fits but the girls are all squished and spilling out up top (which inevitable leads to the big busted girl solution of wearing a shirt-under-a-shirt just to cover up the excessive cleavage).  Shopping for clothes may even become fun (or maybe not…probably not…I just don’t like shopping for clothes…but it will be faster without having to try on as many articles of clothing while in those cramped thrift store fitting rooms, maybe…?).

Billiards, anyone?  Big boobs are a huge handicap while playing pool.  If you don’t believe me, I suggest you borrow a DD bra with a couple water balloons tightly strapped in and try to find a good spot to place the cue.  Above is too high and below is too low…  Not saying I’m going to join a pool league at any point in the near future, but I’m interested to see how it goes when I can actually get a natural angle on the ball (probably not much in my case, but at least I’ll know it was lack of skill all along…).

Cleavage and underboob sweating (leading to cleavage and underboob butter…yeah, I went there…).  Won’t miss it.  Enough said.

I’ll end on that note 😉

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5 Responses to Imaging/chemo/surgery update

  1. I was just thinking of you this morning. Missing you at Guild and think of you often. I had no idea how complicated cancer treatments were until I read this. How utterly overwhelming.

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  2. rebecca cole says:

    I know this road will get old and very tiring before you are through with it. Put your want list up and let us take some of the burden.

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  3. Christine Giblin says:

    You are amazing woman, I think about you everyday and send you happy Reif mantras your way! I just learned how to make Warm Veggie Power Bowls, maybe I will have to come down make you some comfort food soon! Stay strong!

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  4. Sue says:

    Thinking of you often and will see you next week at the ACUC meeting – I will come armed with a jar of 2016 maple syrup loaded with 45+ healthful trace minerals. Your lively post informs and makes me smile and I’m pulling for you all the way! Keep moving ahead!!

    Sue Martin

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  5. Randolph Lambert says:

    Hey Jenny, You are doing a great job of keeping on top of all the byzantine complexity of your situation and weighing your options! I am out of hospital now since last Wednesday; stem cell went fine. now its on to recovery at home, another 6 weeks or so. I and we send you all our most efficacious wishes! Hang in there and keep the faith! We love you! rjcr

    Sent from my iPhone

    >

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