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I know I’ll get flamed for this….

November 17, 2009

…but I have to say I agree with the new guidelines for mammography. In fact, I agree with most of this article titled “Does Mammography Screening Save Lives?”

Further, I agree with Dr. Susan Love who says in her blog entry on this topic: “we need to help women understand what mammography can and cannot do, and focus on finding the cause of breast cancer and preventing it altogether. I don’t want women going for mammograms they don’t need, or feeling I false sense of security because they have had one.” She’s getting flamed, so I’m sure I’ll get flamed.

One thing you need to note is that if you find a lump, nobody’s going to deny you a mammogram or a biopsy, no matter your age, and your insurance will likely pay for it. That’s one of the issues, right? Whether or not your insurance will pay for a mammogram based on the new guidelines. Heaven forbid you should be hit in your pocketbook. Have you priced a mammogram? They cost an average of $102 in the US. If you’re so concerned, cough up the dough yourself or borrow it from someone or go to Komen and ask for the funds. But know that if you’re under a pre-menopausal woman, a mammogram is a poor detection tool.

As Dr. Love says somewhere in that blog entry or in a link from it, mammograms simply do not work that well for pre-menpausal women because their breasts are dense and show up as “white” on a mammogram, as does cancer. It’s a flawed tool for young women. Why not develop a better one and stop making people think they’re “okay” if they get their mammogram or that someone is trying to kill them if their mammograms are taken away? Why not re-direct some of the “early detection” money and try to figure out why so many aggressive cancers are attacking younger women?

We need to focus more money on finding a cure because more and more young women are being diagnosed with very agressive breast cancer. And here I mean women who are under 40 and fall outside the old guidelines anyway. The kinds of cancers that mammograms catch best are slow growing, non-aggressive, and respond well to treatment no matter when you catch them. Also, though more non-aggressive breast cancers are being detected earlier, the death rate from aggressive breast cancers has not decreased significantly.

My situation is an example of a complete failure of mammography. I had a mammogram in October 2003 — no problems. I had breast pain in February 2004 at age 44. I was told that breast cancer is not painful and this was probably a cyst. It is a myth that breast cancer is not painful, but I was going to one of the “top 50 doctors in Seattle,” so who was I to question her? I was also told I could get a biopsy but, since the mammogram done just 4 months earlier showed nothing, it was probably a waste of time. I started bleeding from my left breast in June 2004 — Stage IIB, fast-growing, aggressive breast cancer that would probably have been Stage I had I done anything in February. And now, at age 50, past the magical 5-year supposed “cure” mark, it’s back — Stage IV metatstatic breast cancer.

Furthermore, I started getting mammograms very early in my life — before age 40 — because I have always had a lot of cysts. Now I wonder about all that radiation exposure. Could that be what brought about my cancer?

I know lots of people will disagree with me for various reasons. Flame on! I will probably just let you argue amongst yourselves as I’ve said my piece and I don’t intend to change my mind. Maybe you can go yell at Dr. Susan Love. She doesn’t have chemo brain.

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24 Comments leave one →
  1. November 17, 2009 4:14 pm

    I don’t want to be under a pre-menopausal woman… 😉

    • Jill permalink
      November 17, 2009 4:22 pm

      Goodness! I’ll fix that — just a cross-out if I can manage it. I like funny typos.

  2. November 17, 2009 4:26 pm

    Sorry for the typo comment above!
    I’ve been having at least one mammogram a year for as long as I can remember. Some years, I have had numerous mammos, and ultrasounds, etc., etc. (As you know, I found my first lump at age 18 during my very first self-exam, which you told me about, because they started teaching it in high school health class after I graduated. In 1976, they didn’t have, or didn’t do a mammogram. We went right to surgery. That was number one of five.) They tell me I have dense tissue, plus lots of scarring, so I don’t know why they even try. I am now on the permanent list for getting diagnostic mammos one to two times a year, instead of screening mammos, and I always end up in ultrasound. So, skip the mammo already! You already know you won’t be able to tell what you’re seeing. Argh. Skip the mammo; skip the radiation. Go right to the ultrasound. Now mammo protagonists can have one more person to flame at. 🙂

    • Jill permalink
      November 17, 2009 4:31 pm

      See if your doctor will approve a breast MRI. Not that I think they’re any fun or anything, but maybe you can just do one thing for a year.

      Since we’re sisters I guess you can say we’re both dense boobs — genetically speaking, of course. 😉

  3. mom permalink
    November 17, 2009 5:29 pm

    I guess I get to join your club my daughters. I, too, agree with Jill about the mammograms. Get on with it doctors and technicians.. Since my accident in Sept, I have had a mammo and an ultrasound which found cysts several of them irregular, now have to go back in 6 months to get more diagnostics. I have a pretty darn practical doctor so when I see him next week I will pursue this problem of NO mammograms. Hang in there girls, we can commiserate with each other. All of the rest of you pray and keep the good humor up. Love from Mom

  4. November 17, 2009 8:02 pm

    Hey, mom, if you haven’t been through this wringer yet, welcome to the club, and we’re glad you’re a member, all negative aspects aside, of course. 🙂
    I can offer all kinds of experiential anecdotes for bad or for worse. I’m sure Jill has about as many experiences with these exams. I’m pretty sure trauma can contribute to cysts and lumps.
    We all pray you’re going to heal completely from your car wreck!!

    • mom permalink
      November 17, 2009 9:34 pm

      Thanks to you all. Prayers for you as I do every night. I am interested in hearing other peoples ideas about this and experiences. I have a poem about mammograms and the squeezing of the breast and what the women would like ot do to the man who invented that machine. Anyone like to hear it?
      Love and more prayers for all, Mom

      • Jill permalink
        November 18, 2009 8:31 am

        As long as it’s PG. We have young readers. 🙂

  5. emily permalink
    November 17, 2009 11:53 pm

    Hi,

    WordPress led me to you when it linked our latest posts. Really enjoying reading your point of view on things. I was diagnosed w/bc in March (I’m 25).

    Will add you to my blogroll at americanamazon.wordpress.com if that’s ok with you.

    emily

    • Jill permalink
      November 18, 2009 8:27 am

      Terrific. Good to meet you. Wish it were in better circumstances. I have added you to my blogroll as well.

  6. mom permalink
    November 18, 2009 8:47 am

    I’ll let you read it later and you may decide if it is PG or not, ok?

    Mom

  7. E Lis permalink
    November 18, 2009 9:39 am

    No flaming from this direction, as I think the people who know a condition the best are the ones who have it. I definitely can see how the money could be better spent in other areas. I have witnessed my Mom have numerous mamograms as she has ‘lumpy’ breasts. To date, she has never had breast cancer, although she now has a tumor in her neck and we are awaiting for a test to determine if it is Cancer or not. Kind of ironic in a way or many ways..

    I had a medical provider ask me the other day if I was going to start mamograms early based on my medical history (ie long line of family members with Cancer)? I had to sit there puzzled for a minute, as I have not seen any research or increased risk necessarily if a person comes from a family that has a range of types of Cancer’s in their medical history (have seen some research regarding breast cancer specifically). I finally tried to explain that to the doctor, who then also looked puzzled 😉

    I also question genetic testing, which a person has to pay for themself anyhow. I heard a fascinating comment that I think makes alot of sense, even if a person has a Cancer gene – they may expire from something else first.

    Meanwhile we all have become a family of health nut folks or is that nutty folks?!

    As always continued prayers, good thoughts, hugs and healing white light being sent to you and yours! – Lisa

    • Jill permalink
      November 18, 2009 11:47 am

      Oh dear. I think you mentioned your mom’s tumor in an earlier post and I meant to email you. Do keep us posted.

      I don’t know what to tell you about the mammogram. Maybe suggestion an ultrasound?? I’ve heard the digital mammograms are slightly more accurate for younger women, so maybe ask your doctor if that’s what you’d be getting assuming you decide to get it.

  8. E Lis permalink
    November 18, 2009 3:27 pm

    Yes, Jill from what I’ve heard an ultrasound (or possibly a combo or MRI and CAT scans) would be a better option if I decide I want to know if Cancer is lurking somewhere in my body. I’m not really there emotionally or financially, also not too worried yet as I am a youngin’.

    Not for much longer though 😉

    I had to laugh this a.m. as I was listening to the country station while driving P to school and on came a song that has a line … ‘not in a rocking chair yet and still rocking to rock and roll as I’m not old.’ Instantly hit me the irony, as I remember when the song came out and that was a few decades ago. I think Jeff Foxworthy would say “here’s your sign.”

  9. Bemused Boomer permalink
    November 18, 2009 10:46 pm

    Flame? But why? This is all so very subjective and personal! I don’t know what I think about other people’s mammograms, but I can tell you I got so disgusted with being squished and emotionally traumatized twice and sometimes four times a year because my breasts are grainy, causing anomolies on the film, that I wrote the lab and said “Don’t send me any more letters telling me to come for yet another mammogram. I am ultimately the one responsible for my health, and I will decide when/if I want a mammogram.” I didn’t go for two years. Two years in which technology seems to have improved a bit (or I got a lab that wasn’t as fanatically thorough as the other one,) so I just had the one, no follow ups a week later. It might be a while before I feel like having another one. This might not be a good choice for some other people, but it feels right for me.

    Prayers and lots of positive energy coming your way from me, Jill.

  10. Michelle permalink
    November 19, 2009 11:34 am

    No, you shouldn’t get flamed: I found your comments helpful. I’ve been a bit befuddled since I read about the new recommendations. Here I’d been expecting to start getting mammograms in the next year or so. Now I’ve been granted a reprieve. But is this reprieve a good thing? In 10 years, are they going to come out and say, “Oopsie! No, we goofed. Mammograms starting at age 40 were a good idea after all.” It’s good to have some input from somebody who has breast cancer but still agrees with the new recommendations. So, thanks! 🙂 (I hope you’re feeling as well as can be expected. I’m still praying for you!!)

  11. Cristina permalink
    November 19, 2009 1:06 pm

    I found something interesting…the later age is apparently because pre-menopausal women get the least benefit out of mammograms (higher density/graininess/false readings) and post-menopausal women (generally) have “easier boobs to read.” The assumption is that virtually everyone hits menopause by the time they’re 50. There are plenty of women who are affected by early menopause before they’re 40. So really, ‘they’ should be rephrasing their advice in terms of pre-/post-menopause.
    I think whoever did the press release for the age change missed a great opportunity to remind women about the other cancer screenings they should go through at certain ages (cervical, ovarian, colon…).

    • Cristina permalink
      November 19, 2009 1:10 pm

      And yes…I should re-read before I post… I was thinking about the articles I’d read on CNN and other news sites and forgot about your reference to dense boobs. Sigh. All this gray weather is getting to my brain…

  12. Kim permalink
    November 20, 2009 5:48 am

    Unbelievable — I just heard Carly Fiorina on an interview on CNN saying that she found her own lump 2 weeks after a clear mammogram. What’s unbelievable is that she is against the new guidelines calling for fewer mammograms. Doesn’t she realize the mammogram system failed her? Or maybe even caused her lump with the radiation?

    • Jill permalink
      November 20, 2009 9:55 am

      Amazing. Just amazing. The thing is, if she’d found the lump under the current rules she’d have been eligible for a mammogram right away after finding the lump, so what’s there to complain about?

  13. Mimi permalink
    November 20, 2009 1:58 pm

    No flames from here — I agree with you 100%.

  14. Jill permalink
    November 26, 2009 1:40 pm

    Great article in the Washington Post: http://www.washingtonpost.com/wp-dyn/content/article/2009/11/23/AR2009112301801_pf.html

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