Throwing Curve Balls

So there’s been some new thoughts about my treatment plan.

On Wednesday I met with my doctor at Sloan-Kettering in NYC.  She is young, brilliant, on top of the latest drugs and clinical trials, and seems to really like what she does.  And she’s also a young mom so we can relate.  I’m so glad I have her and the team at Sloan-Kettering.  I’m realizing how important it is to seek multiple opinions and have a strong team behind you.

The big topic of conversation at the appointment this week was surgery…  Something not normally considered for metastatic patients…  But in certain situations (like mine) people are saying maybe we should reconsider.  When the cancer has suddenly retreated and the only thing left is a piece of the primary tumor, maybe it would help to remove it.  Right now there’s limited research on this (they don’t spend many research dollars on the plight of metastatic breast cancer patients), but Sloan-Kettering is taking part in a clinical study to research if getting surgery increases survival time for stage 4 patients.

The problem with surgery though is that it will be a 4 month long ordeal.  With a mastectomy, reconstructive surgery, and possible ovary removal the recovery would be long and I’d have to return to Sloan-Kettering weekly for follow-ups with the doctors and surgeons.  Meaning I’d have to live in NY for 4 months and disrupt little Miss M’s life for a while (not to mention hubby’s and mine).  And I’d need to find someone to help me care for Miss M on those days when I can’t get out of bed or lift a 30 lb munchkin out of the bathtub.  It’s a lot to consider and orchestrate.

But the story deepens…

The day after my appointment, Dr. G phones me to discuss a few things.  She was reviewing my file and discussing my case with the medical team, and they had some questions about the results of my initial scans in December.  Apparently they are not sure if we can wholly rely on the PET scan as the determining factor in my diagnosis and are questioning if I ever really was stage 4 in the first place.  I know – crazy, right?!!?  Dr. G asked me to send copies of the scans from December – the bone scan (taken at the beginning of December that showed no cancer anywhere) and the PET scan (taken 2 weeks later that showed cancer everywhere) – so the team at Sloan-Kettering can reevaluate the situation.

The even crazier thing is that there is no way to prove 100% that I was not/am not Stage IV because we never biopsied any of the remote sites to see if they were cancerous.  And now they’re all gone.

What a mess.

Right now my scans are on their way to NYC and Dr. G has promised to give me a call in a week’s time so we can discuss it all further.  I am just so freakin’ grateful that she is such a great doctor and that she cares.  That she is taking the time and energy to help me.  What an amazing woman.

I also set up an appointment to go to the Block Center for Integrative Cancer Treatment outside Chicago in July.  I really want to find a team that’s knowledgeable about both Eastern and Western medicine and how to combine the two.  The Block Center seems perfect for that.  They’re all about diet, exercise, and the mind-body connection while also promoting traditional western treatments like surgery and chemotherapy when necessary.  I’m hoping this will be the place that truly integrates all the pieces of my treatment plan.

It just goes to show that you truly cannot predict the future.  As my mom always said, “The only constant in life is change.”  Just when you think you’re getting things figured out – life throws you a curve ball.  Craziness.

Peace.  – T

11 Responses

  1. Wow, that must be a lot to process.
    Overall, it sounds positive – am I hearing it right? Surgery is more of an option than previously, and, in fact, things might not have been as bad as they’d thought?

    But wow, yeah, lots to process! Here’s hoping for happy, healing times to process, then….

    • Hey Terri,

      It’s Becky Monteiro, Jamie’s childhood friend. I’m living in Manhattan and have a pretty flexible schedule, so if ever you do need a sitter I would be happy to fill in. Please, don’t hesitate to ask. I love kids, and am happy to help in any way possible! Good luck at Sloan-Kettering; I’ve only heard wonderful things.

  2. Yes, overall the whole thing is seeming pretty positive. No matter what the diagnosis is, the cancer keeps on shrinking – and that’s a good thing. And yep, surgery may be likely (although that’s something i’m not really looking forward to). We’ll see what happens when the story continues…

  3. Look at all your options, listen to all the advice, and then decide what to do. Definitely don’t rule surgery out. Each diagnostic tool has its strengths and weaknesses. If the cancer at the remote sites is gone, perhaps it really has disappeared or maybe it was never there. Who knows? Don’t worry too much about the past, focus on where you are now and make your decisions accordingly. You’re doing all the right things – keep it up! XXXOOO

  4. just a bop bop, if it does come down to surgery… I had written to you before about one of my oldest friends whom had breast cancer they did a lumpectomy and she has a “cutlet” inset to fix the divot ( that’s what hers looked like LOL) another GF had a mastectomy and, a few years after the fact… did you know that a chrysanthemum petals tattoo beautifully to make a large flower? Myself, I had a partial subcutaneous mastectomy 2 years ago. it fills with fluid when I’m horizontal, so looks kinda normal ( through clothes) vertical? caves in through the center… this is where humor comes in… I was horrified when that first happened, and I still am saddened sometimes. I’m 36, and this is very, very odd… but I remember the first thing my husband said, goofball that he is… “oh baby that joke got it wrong, it’s not a flat head to rest your beer on… it’s a breast to hold your salsa…” FYI do NOT burst out laughing with a chest tube…

    so… just a morning breast thought :) I am glad,so utterly glad, that you have great people on your side :) remember,if you do have surgery it’s not scary… it’s only just flowers, cutlets or salsa bowls 😉

  5. It sounds overly positive…but confusing. Confusing and too much! You will find clarity in this. Don’t worry about disrupting Miss M’s life…she will be fine. She is an amazing, spirited little girl. If you have to be in NY for 4 months, we can go visit you in NY so Miss M can see some friends etc. You are not alone. I am sure you will choose whatever way is best for you and your family…and that way will work and continue kicking cancer’s ass. This is ‘sort of’ good news, right?! I have never realized how complicated treatment for cancer can be. So full of politics. Use your energy for what matters, and we are thinking of you.

  6. I applaud your continued search for integrating Eastern and Western medicine. Western medicine is not foolproof. I had an echocardiogram the other day. After an half hour, the tech said “I’ve got to get the doctor. I can’t find your heart.” In the past I would have been angry, but instead I remembered your blog. I laughed and told the tech “People have been calling me heartless for years.” Prayers with you, You are a strong woman.

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