To study or not to study

I debated whether or not to share this here… but as part of my commitment to sharing the good with the bad I decided I would.

Short story… my sister was diagnosed with the big C in her breast when she was 25.  Because of that I am followed closely at Sunnybrook’s Odette Cancer Centre High Risk Breast Clinic.  What does, “followed closely” mean exactly?  Well, at 28 I have annual mammograms, and MRI scans as well as 2 face to face appointments with my Doctor. That’s 4 visits a year.  I’ve said from the beginning, I’ll take the slight inconvenience for the peace of mind that if anything is ever found in any of those scans I’m in the best possible hands, and most importantly – already in the system.

Well, I’m getting to test that theory right now, my MRI has a spot on it.  Don’t panic.  I’m not panicking. My Doctor assures me that this is 99.9%* chance benign (not cancer) but until they do a biopsy – we can’t be sure.  What they can be sure of is that Fibroid Cysts are super common in young women with a generous rack.  Check and check.

Even though I have been prepared for a phone call that says, “There’s something there, we want a better look to be safe,” there’s no denying it’s still an unnerving phone call.  And not just for me, the Boy is not liking this one bit.  My psychoanalysis – it’s a lack of control and an inability to help or fix it that is really getting to him.  Whatever it is, he’s been super sweet about it.

That’s the short story.  And the lesson is when you have the pros looking for something in your boobs every 6 months – chances are pretty good they’re going to find something eventually.

The question is what do we do about it.  Biopsy.  How exactly they are going to go about it is up for debate.  Without getting too complicated I have been asked to participate in a trial study that is going to combine an MR Biopsy with an Ultrasound Biopsy, which may or may not be successful – if it’s not the biggest inconvenience is another day spent at Sunnybrook looking at the painted ceiling tiles (which BTW are painted by volunteers and transformed into lovely works of art, I’ll take a picture on my next visit) doing things the traditional way.  That’s the con.  The pros are, free parking for the day, and contributing to research.  I feel very fortunate to be the recipient of procedures that were at some point trialed by someone.  If people don’t participate, how can medicine improve?

So when I started this post I was still debating.  Now that I’ve made my decision I’m still curious –  Would you feel compelled/morally obligated to participate in a research trial if asked, given that the only con is the inconvenience if it doesn’t work?  (I’m not talking mystery drug trials here people.)

*I made up that stat because she will not give me numbers – just assurance, which I’m fine with.

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38 responses

  1. Thank you for sharing.

    I truly understand what it means to be pooked and pulled ( and I don’t mean the facebook pooking either). Being a woman really sucks sometimes.

    My prayers are with you girly girl. Moelee cares!!!

    Faith

  2. I say study. You’re contributing to making treatment and scanning more efficient and effective for future versions of you. And if it works for you than it’s over and done with and the next time this happens perhaps they’ll go straight to this route and save you the inconvenient run around.

    But it’s your rack and your peace of mind so 100% your decision!

  3. If (any) risks were clearly presented to me and I was comfortable with what was going to happen, sure – as a scientist in my previous life, I would want to do it. But like I said, I would want to be comfortable with procedure/risks/all the not so fun stuff/outcome/etc.

    Your decision to make, and my bestest wishes and thoughts are headed your way!

    • Thanks Lady,
      I have decided to go the study route, and the extra Pro – faster service. I go in Friday at 12:15. Fingers crossed – they have a 100% success rate so far… but they’ve only trialed one person ;o)!
      XOXO

  4. I say go for it. These studies find amazing things because there are people like you that take time out of their day to be inconvenienced…but eventually, cumulaitvely, it does so much good.

    Please do keep us updated. Happy SITS potluck.

    You’ve got a new follower in me!

  5. Hi! i’m visiting as part of SITS Friday potluck. You’ll have to do what you’re comfortable with. It sounded to me that you didn’t really want to be in the study, so don’t be. You have to do what’s comfortable and right for you!

  6. Stopping by from SITS

    Thanks for being bold and sharing what’s it is like to find something and what you are doing about it. And I agree with others that if the risks were acceptable to me then I would take part in the trial. My mother is a breast cancer survivor and I do my part wherever I can now that I am more aware. 🙂 Best wishes!

  7. Getting in a little late on the discussion, but as a breast cancer survivor – dx at 33 – I say yes, go for study!
    I’m almost two years out since my diagnosis and I’ve just signed up to have a TON of blood taken so that it can be studied. I’m BRCA negative (I don’t carry the gene — I’m sure you are familiar with what that is since you have a family history) but this particular study is looking for additional genetic markers. Just think about it…if they found something in my blood that could lead to the discovery of more genes – that would be amazing!
    I get poked and examined visit after visit…there is never not one month that is dr. free. If I can do it, so can you!
    Popping in from SITS

  8. Congratulations on being part of SITS potluck Friday!

    I do the mammograms and related tests yearly (my mom died of breast cancer at 41). Would I join in for research stuff? I’m not sure. Guess it would depend… mostly on my time and things like that since I care for a disabled husband and handle oh-so-many other health and medical things going on in our lives.

  9. Hi there,
    Well firstly sorry about your kinda worrying news, but glad you’re not worrying. It achieves nothing in any case, but you’re right not to be…the chances are vastly in your favour.
    Anyway….my mum died of b.c when i was 5 and my cousin recently fought ovarian cancer, so I’m potentially high risk as well. I have considered genetic testing, but have put that whole emotional minefield on the shelf for a bit because we just had another baby and I’m still feeding him.
    If I was in your shoes, I’d do the study for them. Yes it’s inconvenient, but if it helps them develop better testing techniques, it will help other women who have to walk your road.
    All the best. Hope everything goes smoothly.
    Thanks for sharing.
    (Came from SITS)

  10. That is an interesting question. I tend to say yeah, b/c I typically feel guilty about everything, lol. But, I probably would do it. In the long run, maybe the inconvenience could save a lot of people? And that might help w/ the inconvenience and motivation!

    Thanks for the honesty ! Refreshing! 🙂

    Hi, via SITS 🙂

  11. Well, I’m sorry to hear you have this to worry about. But, like you, I would definitely take part in the research trial thingy. It’s the right thing to do! Wishing you all the best!

  12. I say do the study. If there really is no danger to you, why not? It’s the studies that fill you with unknown drugs that scare me.
    I think sharing this story is a wonderfully brave thing to do. So many women feel alone during this process.
    Best of Luck.

  13. If there were no risks other than inconvenience, I think I would participate. (Glad to see you’re going to) Breast cancer research is so important and any little thing I can do to help would be at the forefront of my thoughts.

    I’m stopping by from SITS this morning. 🙂

  14. Visiting from SITS…I don’t think you should feel morally obligated, but it doesn’t sound like there’s much downside either. I wish you the best!

  15. I know how you feel. There’s a spot on my breast (that they showed me, and it looks pretty scary). They THINK it’s a benign cyst. They are watching to see if it grows. I’ve already had three mammograms/ultrasounds this year, with another one in December. I don’t know about participating in a research trial or not, but I wouldn’t feel obligated.

    Happy SITS Day!

  16. Good luck! Thanks for decided to do the study!

    My vote would be to do the study, but I’m a little biased…breast cancer runs in my family, and like your sister I was diagnosed young, when I was 27. So my sisters go through the same rigmarole that you do! 😉

  17. Thank you for sharing! I had a scare a few years ago…at 31…a definite lump…turns out it was a blocked milk duct…apparently, I’d been hanging around to many babies..while I hadn’t nursed a baby in 3 years, I produced milk which had nowhere to go and cause a lump. Only me! But it was a very scary few weeks… now I have my baseline mammogram and I’m ‘best friends’ with my girls!

    Happy Friday Potluck!
    http://www.singlemominthesouth.com

  18. Well good luck with all this, I think you’re doing the right thing and I’m positive it will work out for the best. Scary stuff. I remember my sister finding a lump back in her 20s- turned out to be fibroadenoma, but it’s all the agonising beforehand. I freak out when I get lumpy breasts from blocked milk ducts.

    Altogether now, ‘sometimes it’s hard to be a woman….’

  19. Pingback: Potluck Friday!! « The Twenties Roar

  20. Great question. I think I would lean with participating, but I can’t say for sure. There are so many times when a trial procedure that is considered harmless is later found to be harmful in some way… When it comes down to it, participating is good for the rest of the world, who benefits from whatever findings come from the study. However, it may not be good for the person participating, and that’s where the million dollar question that you are posing to us comes in, right?
    Congratulations on being featured on SITS today. Have a wonderful weekend.

  21. Compelled or morally obligated? No. Each of us has to evaluate and choose. I know people that have tattoo from nose to toes and others that faint at the sign of a needle. Which one do you think gives blood?
    Greetings from SITS!

  22. Compelled or morally obligated? No. Each of us has to evaluate and choose. I know a person that has tattoos from nose to toes and another that faints at the sign of a needle. Which one do you think gives blood?
    Greetings from SITS!

  23. I went through this SAME thing earlier this year. It was Fibroid Cysts and I had it removed. It can be scary – at least you are already in the system and have a general support. I was alone and with new doctors. Terrifying, but it all worked out in the end.
    Good luck!

  24. Thank you for sharing your story. This is one area that I know I should be more careful myself, but I never am.
    Praying that everything works out for you.

    Congrats on your SITS Friday Potluck day!

  25. Thanks for sharing this story! I’ve been there myself, was diagnosed with Cystic Mastitis a couple of years ago. I come by it honestly – at last check, my aunt had 73 of those little buggers in her breasts… totally benign always.
    It’s a pain, but a relief to know that you are fine. Kudos on being a “test subject = guinea pig” for breast research – we should all do every thing we can!

  26. My mother had breast cancer in her early 40’s (she’s a survivor) and my 27 year old sister has a benign lump in her breast. It’s all scary. My biggest piece of advice for people at risk is to minimize animal proteins and alcohol, and maximize exercise and fresh, whole foods. Best of luck and happy SITS day. Following to stay updated on your story…

  27. I’m battling breast cancer right now. There’s been a big increase in the number of women diagnosed with breast cancer under the age of 40. it really sucks. that said, whether or not you participate in a study is a completely personal decision – don’t let guilt be a deciding factor.

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