Monday, April 27, 2015

#MicroblogMondays - Breast Cancer? Updated 4/30

What a title right? I've posted before about my BRCA2+ status (the breast cancer gene) and how I go through yearly screening, both mammogram and breast MRI. For years, I've tentatively planned to do the prophylactic double mastecomy, but it's stayed in the future...because I really don't want to do it.

I had my yearly breast MRI last Friday, and I got a call back that same day. Shit. I have a "suspicious" .8 cm lesion at 6 o'clock in my left breast. The call came from my Breast Specialist who manages all of my care and screenings. I'm pretty calm when I hear bad news. I'm getting more used to what it's like, so I knew that I didn't and wouldn't have any questions then, but I would soon after. I needed some processing time.

I immediately called my mom (who survived breast cancer at age 44 and gave me my lovely genes). I had already done a quick google search on the reliability of breast MRI and saw that it's notorious for false positives. I also texted my sister who is also BRCA2+ and talked to my husband.

Then the Breast Specialist called back which was perfect because I was ready with some questions. What is a biopsy like? (It's just done with a needle.) So they didn't see this on my mammogram the week before? (No.) I understand there is a high rate of false positives, but since this wasn't on detected a year ago, that's probably bad, right? (Yeah, it's worrisome.).

I also quickly posted on my BRCA Surveillance FB group to see if anyone else had a false positive. And I got quite a few. I was feeling pretty relieved. In my head, there was a 50/50 chance that everything was okay.

That night I was pretty numb, a little snappy at DH. But finally after Dylan was asleep I sat there stewing because he was just watching TV and I didn't want to bring it up myself. Luckily he did and saved himself from my wrath - although I did explain to him how he was almost about to get a huge diatribe. I couldn't stop myself. But he came through.

I went about my life this weekend. On Saturday, I thought about it almost not at all, but yesterday it started creeping back in.

So last night I did some new (better) research. I'm not in the category of just any person getting a breast MRI, I'm BRCA2+ and I have yearly screenings. Lo and behold, there is a study comparing those exact two groups of people (yearly and one time). In that study, the false positive rate for yearly screenings was just 5.6%. Fuck. A different study placed the percentage at 13%, but still, it's extremely likely that I'm in the big group and have...nope can't say it.

So I continued to research. What are the stages of cancer? I'd be anywhere from Stage 1A to 2A depending on whether lymph nodes are involved. That's based on the size of the lesion (under 2 cm). So that's good. But still Stage 1 sometimes uses chemo and Stage 2 commonly does. Although my survival rate would be very high (high 90's) and I truly don't believe for a second that I will not be cured, my mom and aunt are both survivors and my mom's was not caught this early, I really don't want to do chemo.  I've already wondered if I can have my own (long) hair cut and made into a wig for myself. Then I figured that wouldn't work, so maybe if I donate my hair, I can get similar hair? Damn.

And that also means I'm probably going to have to decide very soon whether or not to do the double mastectomy. And I probably will. I mean if my genes are starting to turn at age 34, do I really want to go through this over and over? And that means that I will lose my nipples and have a cut all the way from my nipple to my ribs on the outer side of my chest. Will it affect my marriage? How will it affect me? Not to mention, it's major surgery and I have a 2 year old.

So on Thursday, I go in for a biopsy. If they can find the lesion on ultrasound, the biopsy will be quick and done right there. If they can't, they try mammogram. If they find it on mammo only, I'll have to go to the main hospital to be biopsied. And if they can't find it on either, I'll have to go back for a MRI guided biopsy at a different hospital. I have heard stories where what they see just isn't there the next time...but I'm not very hopeful for that kind of outcome.

I'm tired just thinking about it.

UPDATE - they couldn't see it on the mammogram or ultrasound so I'll have to go in for an MRI guided biopsy. I guess it's good its so small, but MRIs are no fun and now there's more waiting.



26 comments:

  1. I'm so sorry to read this and will be thinking about you this week and beyond. I had two masses discovered on ultrasound last week that weren't there last year and am having them biopsied friday. although I'm not BRCA-2 as far as I know, i'm a bit scared too. hoping it goes well for both of us.

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    1. Oh no! I hate that we are in similar places, but hopefully we can support eachother. I'll email you...

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    2. hey - i think your biopsy is today. thinking of you! i hope you'll post and let us know how it went. my two are tomorrow : (

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    3. It is! I doubt I'll learn much today...just whether they can see it on ultrasound or mammogram...more waiting. I don't know about you, but I've been on and off nauseous just about the whole week. Good luck tomorrow.

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    4. I'd love to hear how the biopsy itself goes. i'm a bit nervous about the discomfort involved and a bit worried they won't biopsy the right tissues. they said results for me won't be back until tuesdayish, so no news tomorrow just the actual procedures themselves.

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  2. Sorry to hear what you are going though, it sounds really scary worrying about it all but please God it was just a false positive and everything will be fine.
    My aunt recently found out she has breast cancer and is undergoing treatment. At the same time she also started adding the herb curcumin/turmeric in her diet and she believes it also helped reduce the tumor.

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  3. Sending You positive thoughts and prayers.

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  4. I saw this title and my heart sunk. I am so sorry you are going through this and being forced to make hard decisions. Cancer is so scary and no one should go through it. I guess only in a perfect world we wouldn't need to deal with this crap. Thinking of you and hoping you get some good news.

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  5. Omg, so sorry you're going through this!! Keeping you in my thoughts. Xxxx

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  6. Sending good healthy thoughts to you. No one should have to worry about this.

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  7. I'm so sorry to hear this. I hope you don't have to do chemo. I'm here for you anytime you want to vent!

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  8. I'm so sorry you got this troublesome news. I'm sure it's pretty scary. I hope you get solid answers soon. I used to work in a high risk breast clinic (probably similar to your specialist) and that's a great place to be. Depending on the pathology of the biopsy, there are other options starting to become available besides just chemo. Get a couple of opinions if needed. They are also doing amazing things with reconstructive surgery. You're being proactive, so even if this turns out to be a false alarm, it's worth it. You will be in my thoughts. Good luck with the biopsy!

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  9. I am so sorry. You are in my thoughts.

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  10. So sorry to hear about the scary news... sending thoughts & prayers through the biopsy and the following weeks and months..

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  11. So many difficult decisions! Hoping for clear, healthy results on Thursday.

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  12. PS I found you through Microblog Mondays. I had to comment using my Google profile, but it's outdated. If you're looking for me, I'm at http://www.travelcraftjournal.com.

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  13. So sorry about this, it's such a crap situation. I hope you get good news soon, and if it's bad news I hope you find a tolerable path forward quickly. I'll be thinking of you!

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  14. Hi - I stumbled on your blog a bit ago because we're doing IVF. Partly because of infertility and partly because of breast cancer. So when I saw your latest post, I had to comment. Firstly, you're going to be just fine. The fact that you have been proactive about being screened is fantastic. Because breast cancer is super treatable when you catch it early. That was my big takeaway from my experience.

    I can tell you that mine was about 1cm, and heavily ER/PR positive. I was fortunate and it was slow-growing. Yours is still small, so that is good. It means either it's slow-growing, or it's not and they've caught it nice and early. Those are both good things.

    Biopsies are not painful. I had two different kinds - one was guided (where I had to lie on table and they did the biopsy from beneath). That was for some microcalcifications post-cancer that they thought were benign but had to make sure of because we were heading into cycle #1 of IVF. The other was for cancer, and he just did it by hand. Both involved a lot of lidocane and I didn't feel a thing. I went right to work after both.

    Waiting on the pathology will be hard, no two ways about that. But again, your worst case will not be that of someone else because you have been checked regularly. There is also a very good chance that if it is cancer, that you will not need chemo. They don't give everyone chemo anymore. There are cases where it is useful and cases where it isn't. Your mass is small so if there are cancer cells, there's a good chance it has not spread to the lymph nodes. Mine had not. I was stage 1A and since my tumor was highly ER/PR positive, we did an oncotype to see how much of a benefit I'd actually gain from chemo. It wasn't much, so we opted not to do it. I'm 3.5 years cancer free.

    They don't give just anyone chemo, and unless it has spread (which I think is doubtful given your situation), you can choose not to do it. If you're considering mastectomies anyway, doing that would likely take away any need for chemo.

    Once we decided against the chemo, I did radiation (which was a piece of cake). Had I chosen to do a mastectomy, the surgery would have been my only treatment. I did a lumpectomy and radiation instead - and then (again because of the ER/PR nature of the tumor) I did a couple years of tamoxifen, which is a cool drug that in case of future cancer cells, it blocks their estrogen receptors so they die instead of growing. I went off it to try IVF on my onc's recommendation, and after we're done, I'll go back on it. I often thought that despite the suckiness of mastectomy the benefit would be never having to worry about cancer again. So even though it's not an appetizing choice for you - never having to go through a scare again is a great benefit.

    There are many courses your treatment can take and although this is a super tough situation to be in (and after all you've been through), ultimately you are going to come out of this fine.

    One thing I do recommend is only doing minimal web-surfing so that you don't scare yourself. I stayed off and let my husband filter information for me. One bad effect of the internet is that it's really hard to assess actual risks. It always seems like 100% of people have a certain side effect or issue, when really it's a very small percent and it's just 100% of people posting that have it. If that makes sense.

    In any case, I will have my fingers crossed that it's not cancer at all, or that it's the best possible scenario. If you ever have any questions about anything, I'm happy to help however I can. Remember, you're going to be fine. Best wishes.


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    1. Thank you so much for taking the time to write such a detailed comment. It was really helpful for me to read right now!

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    2. I'm so glad! Hang in there. *hugs*

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  15. I'm always thinking of you and hoping this upcoming appointment will bring some good news, or at least more information to help you make a educated decision. I am so proud of you for staying on top of this and keeping up with your screenings - it has been a wise decision it seems. Just know that you have people waiting to listen should you need to vent or talk through your thoughts. Good luck and big hugs.

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  16. Oh no... I am so sorry. I hope you have reassuring news ASAP and if it is cancer I hope that treatment is quick and effective. Sending love your way.

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  17. I've been meaning to comment since I saw this. All of it is extremely scary and I truly hope that all of this comes back as negative.

    In addition to the comments above, I want to pass on the following resources.
    ACS: http://www.cancer.org/
    SCCA: http://www.seattlecca.org/diseases/breast-cancer-overview.cfm
    NCI: http://www.cancer.gov/cancertopics/causes-prevention/genetics/brca-fact-sheet

    Finally, both Grey and I have met many cancer patients and survivors over the years due to his work. In every case, these people credit their support systems for helping them survive the process. As hard as it is to reach out, tap those closest to you now. Regardless of the results, this is insanely stressful and you'll need them to get through this time. Use this space too. I'm rooting for you and hoping.

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  18. Thanks for updating. I'm still hoping NO cancer for you. If it is, it will have been caught very early, which is a very good thing. I'm so sorry that they couldn't visualize things so you could move forward. I think the waiting part is the hardest (for me at least). Thinking of you.

    Mo

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  19. Just now reading your posts and catching up. I'm so sorry you're going through this praying for you.

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