Mammos = danger, but a BC dx results in LOTS of mammos...??

Raili · January 2010

Until I was dx'd with BC, I'd never had a mammogram. Now that I'm two months post-dx, I've had so many I can't even count them!! This freaks me out, considering there is so much evidence about the dangers of mammos and how they increase one's cancer risk!

Right after my biopsy, I was sent off for a mammo to check the placement of the tumor marker, and they took at least 3 films of that breast.

After that lump was determined to be cancerous, I had to get a mammo of my other breast, and it was at least 3 or 4 films, TWICE. I went back to the waiting room after the mammo but had to go back in and do it all over again, because it hadn't been quite right on the first try.

Then on the morning of my lumpectomy, I had to start in the mammo dept where they inserted the wire locators into my breast and took SEVERAL mammo films... I was crying from fear and pain and thus not exactly counting the films, but my breast was re-positioned in the plates at least 3 times and it was just a LOT. When I ranted to my mom about how stupid it was that I had to have that many mammos which increase my risk for cancer, she suggested that maybe it was okay because it was less than an hour before the tumor was going to be removed anyway.

But I'm not convinced! It seems to me that there's got to be a better way!

Nan56143 · January 2010

Dear Raili,

Oh how right you are. There is a better way, except all the cancer organizations have a heavily vested interest in the mammography industry, so unless women refuse mammos, this will continue. I am curious as to how they do mammos on men. There are many men dx with bc every year. How can they possibly manuver their breasts into position to get a clear reading?

As for my daughter Lori (age 47), dx with TNBC, she will, from this time on refuse a mammo. Never again for me either.

Raili · January 2010

Refusing mammos is a good idea. I'm embarrassed to admit I hadn't thought of that! Being dx'd with BC is such a scary thing, that it didn't even occur to me, at the time, to refuse or even question the mammos. I just went through as many as the doctors told me to, because I was scared, and I hardly knew anything about BC. I'm only 30 and none of my family members have had BC, so it wasn't until I was dx'd that I started researching everything like crazy...

For what it's worth, my journey STARTED with an ultrasound instead of a mammo, because my primary care doctor prescribed a mammo after she felt the lump in my breast, but then when I arrived for the appt, the radiologist recommended an ultrasound instead because my breasts are so young.

Also, my surgeon tells me I will need an annual screening MRI from now on. I hated the MRI, but at least it's not dangerous like mammos, AND it was the only screening tool that detected the microcalcifications near my tumor, which turned out to be DCIS. Neither the mammo nor the ultrasound found the DCIS. BUT, MRIs can be $1500 each, and I don't know if my insurance company will go for that!

The whole system is a mess! I want thermograms!!

Fidelia · January 2010

Dear Raili and Nan I think you are so right about the over use of mammo - especially after diagnosis - Raili - you will need to work with your surgeon/onc as you work out your post op treatment plans and you can decide whether or not you want mammo in that plan. Depending on your age and breast density - you may opt just for physical exam and if really required an ultrasound which is no where near as difficult to tolerate probably as or more effective for younger tissue than mammos. From personal experience I can say that the role for mammo is definitely for older women with less dense breast tissue - mammos may or may not detect things early - so there is no clear argument for not using them at all - however - once there has been a diagnosis surgery and treatment - you have a lot more experience and your own increased vigilance (without extra radiation) will be as useful to you as painful and possibly harmful imaging. Vigilance, self-exam and attending to any glitch will probably be more beneficial now than mammos. Years ago when TB was a big deal - chest x-rays were the go - nowdays there doesn't seem to be a big program of annual chest x-rays - but when I was a little kid I can remember big white vans near our school - mobile x-ray units - not any more!!!

Fidelia

vivre · January 2010

Raili-I know exactly how you feel. I felt the same way. I had a breakdown almost every day when I went through radiation. I was so freaked by the whole thing. And I agree that the day of surgery, all those mammos where scary too. But I have since learned that you can eventually detox the radiation. I have noticed a huge difference in my breast tissue since I started iodine,and I am getting my fourth therm next week since I finished rads (2 years ago). I know that the therm is finally going to show the radiation going away. It is taking forever! I am also starting on NAC, which is supposed to chelate rads and toxic metals. I will never allow another mammo again. It is my body, not theirs. Find a thermographer you can trust, and you will have total peace of mind. I love being able to see the changes right there, and my doc sends me the results so I can see for myself. The only way we are going to make a dent in the business of mammography is to demand that we are allowed to choose.

CrunchyPoodleMama · January 2010

I TOTALLY agree with you!! I am anti-mammogram unless there's a very good specific need for it... I am in my 30's and had no plans to EVER have one, and do thermography instead.

When I found a lump, my first doctor tried to force me to have a mammogram before he would do an ultrasound. He told me NO doctor would do an ultrasound without first doing a mammogram (which is a LIE!).

Ultimately, although I fought it, I have had the initial mammogram (6 images total), needle loc which meant mammo with at least 8 images total, then another post-surgery mammo which was another 4 images. Plus a random chest x-ray on the day of surgery (argghhhh, NO reason for that -- they did it when I was too drugged up to refuse).

For someone who has always known I would refuse mammograms because of the radiation, this is so upsetting!

BTW, I asked the mammo tech about the radiation risk EVERY time, just to hear them give their silly stock answer: "Oh, you get more radiation exposure walking around in the sunshine!" That is such a lie, but it got to be hilarious to ask the question knowing that that's what they'd predictably spout off.

Vivre, for all I've learned from you and others about iodine, I didn't even think about the idea of detoxing from mammogram radiation. Thank you for that reminder and all the great info you've posted here in the past!

Raili · January 2010

I didn't think about de-toxing with iodine either! I will have to investigate that further...maybe ask my naturopath about it.

Funny that I didn't even think about iodine. I have an emergency dose of it in my glove compartment, which everyone in town gets, since we are 10 mins away from a nuclear power plant. UGH.

CrunchyPoodleMama · January 2010

Funny that I didn't even think about iodine. I have an emergency dose of it in my glove compartment, which everyone in town gets, since we are 10 mins away from a nuclear power plant. UGH.

No way -- that is wild!! so you're supposed to take a dose of iodine in the event of nuclear fallout or something? Wow....

Member_of_the_Club · January 2010

The new, digital, mammograms use far less radiation than the old kind. Honestly, I think you should be more concerned about the cancer you've had, and early detection of a possible local recurrence, than radiation from mammograms.

Raili · January 2010

Well, there's the catch-22, Member of the Club -

Local recurrence may be partially caused by the machine that seeks to detect it.

Yazmin · January 2010

Raili, Nan, Fidelia, Vivre, Crunchy Poodle:

I totally understand your concern. I remain convinced that mammography is wildly overused. Indeed, I feel you should be concerned about the cancer you've had, as Member_of_the_Club said it: that's why I, personally, decided to turn down mammography, after dutifully going through 10 years of mammos every single year, and ending up with a 3 cms tumor that mammos NEVER saw coming, and, in my opinion, have contributed to creating.

There are other sisters on this site who report having the very same experience. If you have a good, open-minded medical team, chances are they will react the right way once you voice your concern: they will find ways to monitor you without putting you through this much radiation in the future.

Anonymous · January 2010

http://www.preventcancer.com/press/releases/may3_01.htm

Looks like mammos don't increase survival.

The National Breast Cancer Coalition has been against SCREENING mammograms for years.

crazy4carrots · January 2010

Multiple mammos, added to other radiography such as chest X-rays, barium X-rays for gastric disease, do add up, as the effects are cumulative. My mother, the first in her family (going back generations) to have BC, never had mammos, but did have multiple gastric X-rays back in the 50's to try and determine what was causing her pain and dicomfort (turned out to be gall bladder disease which was the worst her surgeon had ever seen). She had none of the risks associated with BC, and her two sisters lived into their mid-nineties. I've always wondered if all those X-rays (which were called flouroscopes, with significantly greater radiation doses) were really the cause of her BC.

Now I'm concerned about BC occurring in my remaining breast -- because of the mammos I've already had (first one at 37) and all the ones I will continue to have. Digital mammos do have less radiation, BUT they just never tell you about the cumulative effects. At my appt next month, I'm going to discuss this with my onc and see if U/S might be sufficient. From all I've read, the jury is still out on the effectiveness of therms. They have been studied for 30 years and the oncs I know -- who have done the research on therms -- just don't have faith in them. And they're Canadian, so the profit motive doesn't enter into the equation. In fact, if therms were as effective as everyone hoped they would be, they would most definitely be used in every cancer centre here, because they are so much cheaper. <sigh>

pk0199 · January 2010

FYI-mammos on men are done exactly the same way as women. If we can do small A cup women and get tissue on, we can get tissue on a man.

The radiation dose for an analog mammogram (film based) is approximately equivalent to the background radiation one would receive walking around outside for about 3 weeks. Digital mammos are about 1/2 the radiation dose than a film based mammo is.

Each modality has its pros and cons. I agree with Linda, if therms were as effective as hoped they would be more wide spread use of them. I don't want to get into a discussion about that though. One must utilize the spectrum of modalities as each one has its pitfalls. Ultrasound and therms do not pick up on calcifications, mammos and MRI do. MRI has lots of false positives plus there is a cumulative effect of the gadolinium they inject to ones kidneys. Mammos use radiation but pick up calcs and lumps albeit it is not 100% either. I have seen Ultrasounds miss what a mammo picked up and I have seen ultrasounds pick up what mammos miss.

So I guess what I am trying to say is talk to you doctor and see which modality or combo of modalities will be best to deal with your particular issue as we are not all the same and there are many variables.

Another FYI just so you don't think I am talking out my butt, I am a mammographer, but I am in no way trying to promote mammos even though I am pro mammos, just pass on info so you can make an informed decision.

Yazmin · January 2010

pk0199: Your input as a professional mammographer brings to light the real difficulty of being monitored relatively efficiently while receiving as little toxic radiation as possible: Not an easy decision. Here too, we are on our own, struggling to find information that is not readily available.

I am so grateful that we have each other, and that we are able to pool our information......

Mammos = danger, but a BC dx results in LOTS of mammos...??

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