I don’t want to do chemotherapy again! Desmoid tumors suck….

What a surprise?!

It’s now been three months since I was diagnosed with a desmoid tumor in my right femur. In terms of medical treatment, so far I have done nothing. Absolutely nothing. I quite like this whole doing nothing approach if I’m honest. Especially when the recommended treatment path is chemotherapy. Low dose. But still chemo. Again.

But while I haven’t been treated medically, I have been enormously active on the holistic front. It’s now ALSO been three months since I completely overhauled my diet to focus on clean, whole, plant based food. At the same time I’ve also radically reduced my consumption of coffee, alcohol, sugar, gluten and soy.  I am essentially trying to create a very alkaline environment in my body to kill off desi the natural way.

About four weeks ago I went off to get some more MRI scans. The whole process was kind of annoying. They booked me in for a Sunday and then I sat in the waiting room for 3 hours. The following day I got a call to say that they didn’t get a clear enough picture and they wanted me back in there again. More time in the pressure cooker! And more results.

Two weeks later I logged into the hospital website and noticed my MRI records were there. After some digging I was surprised to see the size of my tumor looked slightly smaller. Naturally I assumed I had single handedly found the cure. I went back to see my Oncologist, to continue treatment conversations but really wanted to explore the new MRI findings. Instead of clapping he told me I was likely just seeing two different readings due to different radiologists. But he did say, he agreed we shouldn’t rush to start treatment given I am in no pain and the tumor doesn’t appear to be growing.

After discussing my holiday schedule we collectively at that point delayed my likely medication start date to late January. Which is now in two weeks time. I have continued to feel very well. I have no pain. So I don’t suppose it’s very hard to understand why I am so reluctant to start chemotherapy drugs.

In late breaking news I just checked the website again and there was an update. After my last appointment I took my original scans in so they could have one radiologist look at both sets. I finally have the results. Apparently there was no visible change in size. I’m a little deflated, but not too much. Des definitely doesn’t look or feel smaller to me. But Des isn’t growing either and that’s a good thing I think.

So that’s where I’m at. Watch this space. Let’s see if the recommendation in two weeks time is more wait and see OR starting a chemo trial.

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7 thoughts on “I don’t want to do chemotherapy again! Desmoid tumors suck….

  1. Hopefully it will be a wait and watch verdict. If not, maybe low dose won’t have many side effects. I’ve had regular dose chemo on 2 different cancers and I would not be thrilled to hear I was doing a third. Keeping my fingers crossed for you.

  2. I hope your tumor doesn’t grow as much as you are still weighing in for other options/treatments and second opinions. I wish you luck and may you find more strength to battle cancer. Cheers!

    • Thanks Stacy. I had another scan in late Feb and once again it was the same. No news (or no change) is good news. But…..next scan is due shortly so we will have an update soon.

  3. I had my desmoid surgically removed in Oct 2015. My oncologist thought that the 25cm mass was an obnoxious fibroid. Mine was intra-abdominal and connected to my bladder and hip. It was wrapped around my ureter and had my bowels moved so far out of their natural position that I couldn’t use the bathroom. I had to have a hysterectomy due to the position of the tumor. He was fairly certain that he got all of the tumor but I ended up with negative margins. They referred me to MD Anderson. They told me that they would likely treat the tumor like a sarcoma and that radiation was the best option. I declined treatment. I have been on a watch-and-wait basis since then. My first scan showed no change or growth. My most recent scan a few weeks ago showed slight growth. It is now 5x6cm. I have taken a holistic, natural approach to mine as well but I haven’t hammered down on it until now. I take a lot of Turmeric and Amino Acids. I use Frankincense in a diffuser at my office. They believe the root of mine is from having a C-section with my son. They believe that the re-connective tissue mutated from trauma. They left my ovaries after my hysterectomy and I’ve read a lot about hormones being a cause of growth. From the beginning of all of this, when the tumor grew so rapidly and they didn’t know what it was, I had just taken myelf off of birth control. I am still declining treatment and waiting. I wouldn’t wish this on anyone.

    • So sorry to hear your story, so devastating and unfair. Perhaps the worst part is the not knowing why. I guess that’s part of all cancers but this in particular is so rare and unpredictable. Sending you prayers and hugs.

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