The Scan Results Are In…

And basically, in my mind, the news is great!

The PET scan showed only two spots of concern and I am convinced that both these spots are related to inflammation and scar tissue from my mastectomy and ongoing breast expansion.   And everything else is clear.  :-)  Hooray!!!

The first spot is a lymph node measuring less than 1cm with an SUV rating of 2.2.  (Generally an SUV rating of 3 or below is considered inconsequential).  So I figure we can just go right ahead and cross that one off the list.  My oncologist agrees.  Done.

The second spot is in the subpectoralis region of my left breast at the top of my ribs at the site of my mastectomy.  It is 1.4cm and has an SUV value of 5.9.  My oncologist has ordered a bone scan and x-ray to evaluate the area further.  We’re not sure yet what to think about this spot.  Hopefully further scans will clarify what’s going on there.

But then, on my way to pick up Miss M from school after my appointment I was pouring over the scan results in my brain.  I remembered that tumors in previous PET scans all had SUV values of 13-16.  Nothing as low as 5 or 6.  Then it occurred to me that the lymph node that lit up was in the same area that I had a lymph node removed during my mastectomy.  Could it just be coincidence that I only had one lymph node removed during surgery and now only one lymph node, in the same area, was lighting up on the PET scan?  You know me, I don’t believe in coincidences.

So when I got home I started to do some research…  Turns out scar tissue and inflammation can cause false positives in PET scans up to 6 months after surgery.  One woman told how her PET scan lit up after surgery and the doctors ended up doing a biopsy of the area, thinking it was cancer, only to find out it was just scar tissue from her mastectomy.

I also looked up my old scans and realized previously suspicious areas with similar SUV ratings in the 5-6 range were dismissed with a simple note to keep an eye on the area in future scans.  And all of the seemingly suspicious areas disappeared in subsequent scans.

So now I am seriously thinking that both the areas are scar tissue and inflammation from my surgery.  Which means that in a roundabout way my scan was essentially clean.  That’s my story, and I’m sticking to it (until proven otherwise).

I also told Dr. K about my plans to take a break from the Herceptin.  His first question was why.  Although he did seem concerned, he did not try to talk me out of my decision.  I told him about my fears and presented my reasoning, to which he said that I offered a very good argument.  We agreed to take a break, at least till my next set of scans…  Then, who knows…

He also asked me yet again about my plans to take the estrogen repressing drugs Tamoxifen or Arimidex (as he does every time I see him).  And again, I told him I had no plans to take these drugs.  I’m not sure how many times I’m going to have to tell him before it sinks in.  Even when I told him about the good results of my hormone tests with the naturopath, he still encouraged me to consider having my ovaries removed as an alternative way of lowering the level of estrogen in my body.  I told him I’d think about it.  And I will.  I have been.

I truly love Dr. K.  He has been amazingly attentive, warm, caring, and open minded oncologist.  But I get the sense that he believes there is no way to keep cancer from spreading without the use of pharmaceuticals.  After agreeing to my sabbatical from Hereceptin and hormonal suppressing drugs, he asked if I was aware that the cancer may come back and spread if I don’t use these treatments.  And my response was, yes, I’m aware.  But I’m also aware of many women who do the treatments and have the cancer spread anyway.

I know everything can change in an instant.

But I keep coming back to the idea of uncovering the roots of why I got cancer in the first place.  Not just trying to cut off the infected rotting branches but addressing the roots of the tree, the soil, the environment, to ensure no more infected branches grow.

In my case, I am pretty confident in the knowledge of how my roots became diseased…  Ultimately, it was the combination of a bunch of different factors that eroded my soil and left me prone to disease…  The hormonal surges of pregnancy and breast feeding…  The incredible amount of stress I was under that severely compromised my immune system…  The fact that I started smoking cigarettes again…  All the horrible foods I stuffed in my face to deal with the stress and sadness…  The lack of exercise…  The 20+ pounds I packed on…  My poor coping skills…  My inability to ask for help…  Taking care of everyone else but myself…  Pretending like everything was ok when it so wasn’t…  And most importantly, the immensely heavy grief I carried from losing my mom to cancer…

It was the perfect storm.  A rare occurrence.  A convergence of factors that together left my body ravaged and vulnerable.  Each ingredient compounding with the next to send my previously dormant cancer cells into a flurry of activity.

These days, I think a lot about a question my therapist asked me…  When the next storm starts brewing (because we all know storms will come) – how will I handle things differently?

I think about this every day.  So I’m making changes.  Preparing for the storms.  Addressing the root causes.  Tending to the soil.  Changing the environment – both inside and out.  And this I believe will keep the cancer at bay way more effectively than just cutting off or treating the rotten parts of me and never addressing why I started rotting in the first place.

I encourage everyone to take stock of their lives.  Take a look at your roots.  Your soil.  Figure out what’s helping and what’s not.  Fortify yourself.  Nourish yourself.  Prepare.

Are your roots strong enough to make it through the storm?

Peace.  -T

40 Responses

  1. Happy dance here in 02740!!! Fabulous news and with every word written, I sense your strength and resolve and determination to follow your path and kick your way through this! So, so thrilled to read this Terri, sending a huge hug and lots of love your way…
    xox
    Dori

  2. i could see it on your beautiful face when you visited that this was going to be a good scan result- i could see you knew it- i’m so happy to read this- so, so, so, so happy!
    i will listen to what you said and wrote too- love,
    kat

  3. Those last three paragraphs are the kicker, yes, indeed — I take them to heart, and I thank you for them. Plenty in my own life to get a handle on, and to change if it isn’t helping. I’ve been doing a little better at it lately — and I’ll keep at it, too.

    Meantime you are in my thoughts and prayers, along with Marisa and Heron and your whole family. Much love, John

    • It’s always a work in progress for each and every one of us, eh John? We’ve all got shit we need to deal with. And change is incredibly difficult. Give yourself a pat on the back for the steps you’ve been taking in the right direction (and maybe even a nice little reward too :-) Sending love back to you…

  4. so incredibly happy to hear of these results. i’m sorry i haven’t written more to you…with each and every blog post, i can’t convey how inspiring your messages are. i feel so blessed to know you and love you! big hugs and kisses to you, your husband and miss m! c, g, f and y

  5. I’m not a physician, but it seems to me that grief, a mere extra twenty pounds of weight, and stress really can’t necessarily be considered as primary causative agents, although they can exacerbate a situation caused by other factors. Of course they contribute to poor overall health, but it might be that you should place a heavier weight on tobacco use and chemicals added to junk food (nitrates/nitrites, etc.), as well as the possibility of a genetic heritability since your mother had cancer. Have you been tested for the BRCA-1 gene?

    I don’t say any of this to attempt to invalidate any of your choices for recovery, but just to point out that some things have greater importance in the biochemistry of cancer causation than others.

    I continue to be happy for you that your recovery is proceeding well, and that you are doing the things you are to make your life better overall. Given that my own mother died of liver cancer and that my late mother-in-law was a breast cancer survivor who lived a long life after her mastectomies, I have every sympathy and empathy for your situation.

    Love and respect to you, your husband, Miss M., and your father.

  6. Fabulous news! We also have some good news. We went and got a second opinion at Mayo and the doctor there, considered one of the best in the nation, wants to take a “wait and see” attitude. He says in 90% of the cases he’s seen similar to my husband’s, it just “sits there.” So he’s going back in two months, then four months, then eight months, then yearly. With any luck, it will never become an issue. He also said that if it was going to metastasize, it would have already shown up already since it seems to have been there awhile. I’m so glad we got a second opinion. The first immediately wanted to start radiation or to remove the eye!

    • oh Morph… I am over the moon happy to hear your news. I’ve thought of your hubby so many times since his diagnosis in December… wondering how you guys were doing. I’m realizing it’s always a good idea to get a second opinion. so glad you guys did – And you went to the best of the best! Keep on, keepin’ on sista! You guys are doing great. Big hugs.

  7. Whoops. I just looked at your Facebook page and saw that you were tested and don’t have the BRCA-1 or -2 genes. My apology, and congratulations! That’s a large worry evaporated right there!

    The love and good wishes still apply.

  8. Yahoo! Great news about the scans Terri. I so admire you for sticking to your decisions in the face of opposition. I feel deeply that you are on the right track and am mightily impressed with the effort and research you have done in order to make those decisions. Hugs to you and the gang.
    Stevie
    PS I’m also delighted to hear Morphidae’s good news. Happy thoughts and good energy to you and your husband, Morphidae! :)

  9. Wonderful news!! Hoping that you will make it back out to the west coast sometime this year – we would all love to have a visit with you!
    love! martha

    • Would love to have a visit with you too Martha. And all the rest of the crew. I promise to let you know when Miss M and I are back out that way. Probably won’t be till summer time. I refuse to come to the pacific northwest until I’ve got a pretty good chance of getting some warm sunny days :-) xoxo

  10. Once again, you blow me away, not only with your amazing,
    eloquent words of wisdom, but also with how beautifully in tune you
    are with your tree, aka body. I am so happy to hear this news! Let
    logic reign supreme!!! Big hugs tomorrow when I see you at
    Overfield, my friend.

  11. Wonderful, hopeful news, and some very thoughtful insights
    – which I plan to take into account in my own life. All my best
    thoughts go to you and cautious optimism 😉

  12. Dear Terri: this may be your best post yet. I am so relieved, I’m having trouble getting my breath. What sharp eyes you have! Thank you, universe!!!

  13. You never cease to amaze me dear Terri! SO thrilled at this news – although not surprised due to the way you are consistently rocking the ‘stats’ :))
    Oskar sends a special hug to Miss M and thinks her Mommy is pretty ‘freakin’ (his new favourite word!) cool!
    Love to you 3!

    • Tell Oskar thanks for the hug. Just yesterday, Miss M was asking when we were going back to Bowen Island. She said she wanted to see all her friends. We miss you guys!!! Thanks for everything. Lots of love…

  14. Yes yes YES!!! Your scan reinforces the validity of your choices and efforts. I believe your reasoning is rational and sound. You are definitely “freakin’ cool!” You have made such progress! I envy that, and am inspired to try harder, myself, to improve our diet and especially learn how to better manage stress, which can be so dangerous to those with our conditions. It’s endemic, but how we deal with it is what makes all the difference. I repeat your other comments: YOU ROCK!

    • Thanks Elizabeth! I have to admit, I’ve made some pretty extreme changes to my life. I think a lot of folks wouldn’t want to go to the lengths I’m going. And it is a daily struggle to stay on the “healthy” path… But I do believe even a few changes can make a whole world of difference. You don’t always have to go to the extreme. Baby steps. With all your knowledge and wisdom you’re more than capable of taking some of those healthy steps. You can do it!!!!

  15. WOOHOO!! This is FABULOUS news!! I am convinced 2013 is the year for us to say hasta la vista to cancer for good. Gotta love Dr. Kulkarni!!
    My Madison was enamored by you Monday night. She asked me so many questions about you and your cancer after you left. Her biggest concern was, “Why do Mommy’s have to get cancer”? And that’s what I’ve been asking for the past year myself.
    I love your tree, roots, soil analogy. It totally makes sense!!

  16. T- I am so happy to hear things are going well for you.
    Your positivity and drive are great encouragement to all. You have
    truly valid points for all of your choices. I miss your spirit and
    smile! Hopefully after I deliver this baby in 34 weeks I’ll be back
    at Dr.K office! Love and prayers to you! Nurse Stephanie;)

  17. I am so happy to hear this news. I find so much strength in your posts. Thank you for sharing them. As I have said before, I feel that we share way too much in common.
    I also had my first child at 38 and while I was pregnant my mother passed of cancer (I am brca- and I was adopted anyway) ) then in 2011 I had my son…while I was pregnant my father passed away. There were many other stresses at that time…my husband was laid off…etc…I went into auto pilot. I gained a ton of weight for the first time in my life. We finally made it out of that hard time and then two weeks later…just when I felt I could breathe…I found out I had cancer.
    I agree with you…stress, poor diet, lack of excercise, lack of sunshine, and a very poor way of dealing with my parents deaths brought me to where I am now. I realize now that we were surviving, not living, and certainly not in ANY healthy way.
    I have no doubt. You are correct. This was the cause.
    Keep doing what you are…keep positive…keep inspiring others (like myself),
    Keep posting:)

    • Holy cow! Too many similarities. Scary. And so sad. It’s been just almost 3 years since my mom passed and I’m still grieving BIG TIME. I can’t even imagine having to go through that and then losing my other parent immediately after that as well. Phhewww… When it rains, it pours, eh? Hopefully, you can find your way out of the insanity. Therapy has helped me IMMENSELY! And just making time for myself. Time to grieve. Time to cry. Time to heal. Time to create things that honour my mom. Time to think about what I want from life. Make sure you take time for yourself. Make yourself a priority.
      Keep me posted on your journey. Much love, – terri

    • Thanks Kathleen! Love the article. Let me tell you, it is a serious hustle to live in NYC on a regular “middle class” salary. Most of us live in the outer boroughs (hubby and I lived in Queens & in the Bronx) where rents are a little more reasonable. But even then, it’s tough. It’s true what the say – if you can make it there, you can make it anywhere. All that being said, I’d move back in heartbeat. Now I just have to convince hubby… xoxo – T

  18. Just watched ur moms tribute on ur aunt Laurie’s FB
    pg..then noticed ur pg..I must give u thumbs up for all ur blogs of
    honesty and emotion….being a survivor myself puts so much into
    perspective….each day is a gift!! Relish every moment.. I read
    some older posts and I too refused on going treatment w the
    Tamoxifen…. I’m told my oncologist that I needed a break from all
    meds!! I have yet to resume it as of yet..I did in fact smoke cigs
    myself and have had a love/hate relationship w/ that!! We can’t
    beat ourselves up about it.. It is what it is..again I just wanted
    to drop a line to say keep on keeping on and god bless u and ur
    strength ✨✨✨

    • Hi Jodi! So good to hear from you! I heard through the family grapevine that you’re doing well. And I’m glad to hear i’m not the only one who refused to take the Tamoxifen. I feel like such an outcast sometimes going against the “norm” but the more I learn about others doing the same thing & doing well, it makes me feel a little less scared and a lot more hopeful. Take care cousin. Hugs, – T

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