Haven’t had much to say lately. There have been a lot of reasons for that . . . being busy with work, being in pain (which I think is probably . . . and hopefully . . . because of an increase in work hours and just simply the fact that I am doing more and more).
Tomorrow I have a breast MRI . . . a bit odd, since I no longer have breasts. But, I do still have some breast tissue (after having reconstructive surgery) and since I have had pains in my chest my oncologist wants me to have the MRI. I have some other tests, that I am not so worried about. So tomorrow will be a medical day (used to have so many of those). I hope that tomorrow’s results will be good.
This is a picture from one of the last road trips I took before the cancer roller coaster began. It is time for a weekend get away . . . soon.
I will be going to the hospital where I had my first breast MRI almost three years ago now. It was the day that I found out that the cancer in my right breast had unfortunately spread to my lymph nodes and was invasive. It was a tough day. It was the kind of day that so many women (and men) have experienced and continue to experience.
My Aunt Ann died of breast cancer in 1994. And, to this day, there is still no cure and very little change in the survival rates. Some make it, some don’t. Some get it some don’t. Some get it a second and third time, some don’t. Not a lot has changed. And anyone who has read my blog, knows all about how I feel about Susan G. Komen’s “Race” (sic) “for the cure” (sic).
Still, Herceptin became available since my Aunt’s passing. I am lucky. I am still here because of the availability of that drug.
And when I think back to almost three years ago, going in for my first breast MRI (back when I had breasts, breasts that were apparently trying to kill me) I already knew that I had breast cancer. I already knew that I had “the bad kind”. I already knew that despite the fact that I felt no lump, and that my doctor’s felt no lump, the cancer consumed most of my right breast. How could that be?
I had dense breast tissue. And, I had a fast growing, aggressive form of breast cancer. On the initial mammogram that detected it, it was like a spider web like appearance, something that was ultimately called “multi-focal” breast cancer (meaning multiple locations and diffuse). From my understanding of it, that is part of why I did not feel anything and why my doctors did not feel anything abnormal.
That is something that still floors me . . . that I never felt a lump, that my doctor’s never felt a lump.
Women need to know whether they have what is called “dense breast tissue”. We need to know this because it a) increases a women’s risk of getting breast cancer and b) it makes detection harder . . . which can mean a later diagnosis.
I also want women to know that there are other signs of breast cancer than simply feeling a lump. I had breast cancer for some time before it was detected. We know this because, looking back, there were symptoms.
What I did feel was exhaustion. I was tired. My body was, after all waging a war, fighting. I also had night sweats. And when I say night sweats, I mean waking up completely soaked, drenched kind of night sweats.
I brought these concerns to my primary care physician and he told me that I was probably going into early menopause. I didn’t really trust this, in my gut, I thought it had to be something else. Still, not in my wildest dreams did I think it was breast cancer. But, about six months later, in a mammogram, I found out the real reason why I was so tired and having night sweats.
I say this here because I want everyone to know what my primary care physician did not know: that night sweats and exhaustion can be signs of breast cancer. My doctor dismissed these symptoms as being attributable to “hormonal changes”. I had Estrogen and Progesterone responsive breast cancer. So there definitely was something hormonal going on. But, my doctor never looked into any other possibility. My oncologist tells me that these were very common signs of estrogen responsive breast cancer.
We trust our doctors, or at least we want to. I knew in my gut that my doctor’s explanation of my night sweats and being tired was wrong. In fact, he told me to take supplements that would have actually increased the estrogen in my body (thinking that my symptoms were from a drop in estrogen). I would imagine a simple blood test could detect hormone levels . . . at least I would think. But, none of that was done. I didn’t take those supplements (fortunately – because increasing estrogen levels would only have fed the cancer I already had at that time). But, I also did not trust my gut enough to seek out another doctor. And I didn’t know I had dense breast tissue, and I didn’t know that night sweats could be a sign of breast cancer. And, unfortunately, my doctor did not know either. (By the way, I have a new primary care physician).
I have spoken to so many women lately who have either put off having a mammogram (have never had one yet and they are years past 40) or that they just haven’t had one in a few years. And, in further talking with these women, not a single one knew whether they had dense breast tissue.
There is legislation being contemplated to make it a requirement that patients are informed as to whether they have dense breast tissue. This would go a long way to better detection, earlier detection and hopefully prevention (if a person knew that they had dense breast tissue, then perhaps extra precautions could be taken to help prevent breast cancer. And, it would be a basis for patients getting better imaging – a breast MRI, for example, rather than relying on a mammogram that may not detect cancer in a patient with dense breast tissue until it has spread farther, become bigger, become more visible).
So, get a mammogram and when you do, ask the radiologist whether you have dense breast tissue or not. And be aware of your body, trust your instincts and if you think your doctor’s explanation of something is not right, then go see another doctor.
Well, it is now already tomorrow (this post has taken me into the next day). So I am hours from spending a chunk of my day back where all of this started. Hopefully all news will be good.
I appreciate your prayers and/or positive thoughts coming my way.
Love and peace,
Lisa
cancerfree2b 
Lisa, the info you share here is priceless. Thinking of you today as you get your MRI and sending good wishes and lots of hugs. Keep us posted. xoxo
Thank you Stacey!
I worry a bit about today (partly because they never seem to be able to get an IV in) but, mostly because I have been feeling exhausted, so tired. But, my hope is that the exhaustion is just from doing more (as I am doing a lot more, working a lot of hours and taking on a lot more). Still, makes me a bit nervous.
Thank you for the good wishes and hugs! 🙂
All the best,
Lisa
I’ve just said a prayer for you, knowing you’re probably getting your MRI as I write this. It’s a stressful time, I know.
Awe, thank you Brenda!
xoxoxoxox
LIght and love in abundance. Anniversary times are stressful in and of themselves as are tests. Keep us posted.
jms.
“Light and love in abundance” . . . oh, I like that! Thank you Jody!
xoxoxoxoxox
Lisa
I have a similar experience, Lisa. It’s an important story to share! Keep up the good work!
Hi Carrie Anne,
It is amazing how little our primary care physician’s know about breast cancer . . . and they are often our first line of defense (aside from getting a mammogram).
Thank you for your comments! I really appreciate it.
xoxoxoxox
Lisa
Lisa,
Thanks for the valuable information! I have dense breast tissue – which may explain why every time I have a mammogram, I have to have a sonogram to interpret the mammogram!
Good luck today. You’re in my prayers.
Love,
Sandy
Thank you Sandy.
I am so glad that you know that you have dense breasts and that your medical practitioner knows to follow up with a sonogram. That is so great!
I miss you . . . Supermex soon?
Love,
Lisa
Supermex soon! 🙂 I have a cold right now, but as soon as I’m well, I’m calling you to schedule!
Sandy,
I am so sorry to hear you have a cold. Boo! I am sending healing vibes your way! I look forward to meeting up when you feel better!
Love,
Lisa
I am so glad I found your blog! It came about because of Komen’s announcement today about Planned Parenthood. A friend directed me to Think Before You Pink. I, too, feel awkward in the sea of pink, for so many reasons. Anyway, here’s part of my story. I’ll look forward to following you! (I’m in the process of making a website so I can blog all the stories bumping into each other in my brain!)
http://minnesota.publicradio.org/display/web/2009/11/18/martin/
Hi Leslie!
Nice to meet you and thank you for sharing the link to your story. I look forward to your website! Please keep me posted on when you launch it. Are you going to do a website or a blog? Blogs are super easy and are essentially websites anyway . . . not like you need me to tell you any of this. 🙂
Thank you so much for commenting on my post. I look forward to seeing your website! I am sending you a friend request on facebook (feel free to accept or decline) it will come from Lisa.
All the best,
Lisa
Lisa,
Thank you for such an informative posting. As someone with dense breast tissue who almost slipped through the cracks, I can relate to this. I tell everyone who gets a mammogram or any other kind of screening test to ask the medical provider if they have dense breast tissue. I’m glad legislation is being contemplated in order to tell women (and men) this information.
Such an important posting.
Thank you Beth!
I do the same – it is so important to know. A friend of mine just had a mammogram this week (not her first and they told her everything was fine). But, when I asked her about whether she knew if she had dense breast tissue she said that they told her that “her breasts were ‘lumpyish'” I don’t know if they meant by “lympyish” if she has dense breast tissue or not? And, essentially, she does not either. So, I have urged her to pursue that and find out what they mean by “lumpyish”. (Good grief, I mean what does that even mean?!!) Sigh.
Thank you for your comments. I really appreciate it. The legislation in California did not make it through. I believe it is because insurance companies lobbied hard against it . . . after all it would do two things: 1) set a new medical standard of care – requiring doctors to notify patients if they had dense breast tissue – so if a doctor failed to do that, it would be automatically malpractice and the doctor’s insurance company would be liable for any potential dollar claim and 2) a person who has dense breast tissue would likely be entitled to more expensive imaging like MRIs. That is what I think killed the bill.
So my question is this . . . since it is absolutely, without a doubt a known fact that women with dense breasts have a higher chance of getting breast cancer and it is also a known fact that detection of cancer in dense breast tissue is harder, then why is it that Komen does not ‘educate’ women as to the risks (and need to know) of having dense breast tissue. And, why doesn’t Komen use some of their resources to fight and lobby for this legislation? And, maybe they have lobbied for it, but, my guess is that they have not.
Sigh.
Sorry for the ramble. 🙂
I am so glad that you did not slip through the cracks!
All the best in health,
Lisa
Oh, and I hope your MRI went well.
Thank you Beth!
Results yet? We need to keep making noise. Dense tissue is generally younger women and younger women tend to have more aggressive diagnoses……. Keep the info coming!
Stay well!!
Hello AnneMarie,
First of all, I just wanted to tell you how sorry I am for the recent loss of your friend. This is so sad and I am so sad for you and for her and for her family.
I just (within the last few minutes) received the results of my MRI (I logged into WebMD and my doctor, or someone, had already uploaded the report from the MRI) and the news is good. No evidence of disease. I am still waiting on other tests, but, so far so good. I will see my oncologist on February 9th and will know more then about things. We haven’t figured out a source for the pain I am having and so I don’t know if that will mean additional tests or not. Your story of your friend who succumbed to breast cancer – of how it spread to her bones, to her liver, to her lungs . . . it is just so sad. It is what those of us who have had breast cancer all fear . . . that it will come back, that it will spread. I am so sad for your loss and yes, selfishly I think of myself too and worry. It is SO important that you have shared this story because truly people on the whole (I think) do not know or realize that breast cancer claims lives, many lives. So many younger women seem to be diagnosed now and diagnosis in younger women tends to be cancer’s that are more aggressive (mine was HER2+, ER+, PR+ and multi-focal and had spread to my lymph nodes – all very bad for prognosis and risk of recurrence – these types of cancers have a higher recurrence rate and overall poorer survival rates). It is what it is. But, not enough is being done. When a little girl loses her mother people need to know that this is happening EVERY DAY, you are SO right, it is a dirty little secret. Thank you for your post, keep it up (as painful as I am certain it must have been to share your loss, it will most certainly lead to the kind of awareness we truly need).
Thank you so much for thinking of me. I really appreciate it.
All the best in health.
xoxoxoxoxox
Lisa
Hi there was browsing and came across your blog. Was interested to find that you also had drenching night sweats before diagnosis and wonder if this is an overlooked sign of breast cancer. I had a heavily node positive E+ breast cancer diagnosis around same time as you aged 37, also dense breast tissue. For months and months before diagnosis I had soaking night sweats – literally you could see the patch of wet on the sheets where I’d lain. But I worried I was having an early menopause. It was definitely something to do with the cancer as the sweats stopped as soon as I had surgery (mastectomy and all lymph nodes out). But I never see night sweats listed as a possible breast cancer warning sign. Anyway keep strong and good luck with your unwanted breast cancer journey. Kx