Apr 4, 2019 02:53PM AliceBastable wrote:
Posted on: Apr 4, 2019 01:48PM - edited Apr 4, 2019 02:01PM by Lea7777
What are the odds of death over a 30 year period of driving without a seatbelt (choose average driving distances, average car weight, average traffic density in US, average age of driver--all VERY AVERAGE CONDITIONS) compared with the odds of death over a 30 year period after being diagnosed with LCIS?
The comparison could be tweaked with different time frames or different countries or different ages of the driver/LCIS patient.
It would also be appropriate to do the comparison with and without anti-estrogens. And to include in the comparisons those who chose a prophylactic bilateral mastectomy for LCIS. Ultimately, to do or not to do a PBMX is what I am seeking guidance on and my relative risk if do not do the surgery.
Even a rough estimate would be very informative to know the type of risk being undertaken and to put that risk in perspective. Wouldn't that comparison be useful to you?
I am serious about who might provide these approximate numbers--Amercian Cancer Association, American Cancer Society, Mayo Clinic, National Institutes of Health, Malcom Gladwell, Centers for Disease Control, an actuarial* association?
For the record, I never drive without a seat belt and feel it is the height of irresponsibility to do so. I want to bring that same perspective to my medical situation but have no numbers for context.
*LCIS does not alter your ability to get life insurance a former insurance agent friend told me.
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Apr 4, 2019 02:53PM AliceBastable wrote:
Apr 4, 2019 03:21PM MelissaDallas wrote:
I think it is pointless for me to worry about it. I either get it or I don't. What are the odds that I will have a stroke or any number of other things that are probably more likely and potentially less survivable?
Apr 4, 2019 04:31PM light1candle wrote:
Lea7777: I'm pondering all this like you are. I am really trying to decide within in the next six months or so about preventative mastectomy while I still have pretty good insurance through my job. (I'm not convinced that Medicare will pay for a prophylactic bilateral mastectomy for LCIS, if I decide that I want one after I retire.) I'm not convinced that the risk calculators are really very helpful at this point.
Since risk calculators are not that helpful, I have decided to focus on trying to answer some queries related to how I would *feel* about the possible scenarios. Can I look at the LCIS diagnosis as a "gift" that gives me a chance to make some important choices in my life? How would I feel if I passed up my opportunity to have a bilateral mastectomy and then later got cancer? Would I have regrets and "kick myself" over the road not taken? How would I feel if I had a BMx and the pathology showed no abnormalities of any kind? Would I be grateful that I dodged the "bullet" or would I regret losing my breasts? How important is the loss of erotic sensation to me? How would I feel if I ended up with post-mastectomy pain syndrome? And so on.
I'm not really comfortable with just doing surveillance and it looks like the anti-estrogen meds are just not for me. Not sure about the answers to those questions yet, but there is one question I can answer right now: How would I feel if I had a BMx and later got cancer? I could live comfortably with that, I think, because I would know that I had done all that I could.
Apr 4, 2019 09:53PM Lea7777 wrote:
To address the why and the pointlessness, if I knew that the odds of cancer-caused death stemming from LCIS were equal to or higher than deaths from no seat belts, I could intuitively relate to the amount of risk I am undertaking if I keep my breasts. For me, that risk would be too high, since I would not drive without seat belts--certainly not for the next 30 years. It would put the risk in context. If the LCIS risk were much lower than the no seat belt numbers, that would also put the risk in context. I'd likely say, "Oh, that's not that high of risk. I can handle that. No worries."
This seat belt - LCIS comparison is not just finding numbers to fret about or playing stats games, it would help clarify what level of risk is acceptable or unacceptable to me.
I agree that worrying about things like strokes is a waste of time and I don't worry about strokes, but I also don't smoke to reduce my risk of stroke. I agree that worrying about what we have no control over, such as planes falling on us, lightning strikes, or mass shootings is useless and deserves 0 time.
My entire career, and life for that matter, has been spent using as accurate of data as I can to make decisions. While some decisions cannot be quantified, I believe that breast cancer deaths when LCIS is present can be (have been) documented and a risk factor can be calculated that could be compared to other risks in life (no seat belts is just one example). How those risks compare would provide insight, in my opinion.
Light1Candle poses the questions I ask myself and likely you all ask yourselves. Moving from risk assessments to feelings may be a move in the right direction.
Thanks for all of your thoughts.
Apr 4, 2019 10:00PM AliceBastable wrote:
Well, I just found out today that I need a biopsy from where I had a nephrectomy last year. If they find something, I jump to Stage 3. So things like this can throw anyone's calculations out the window, whether breast cancer or car accidents. My breasts, apparently, are fine.
Apr 5, 2019 10:15AM Beesie wrote:
Lea, I'm very analytical, I always want to deep-dive into the data and I make my decisions based on a factual assessment of risk vs. benefit. I research like crazy.
Yet your analogy confuses me.
I too would never get into a car and not put on the seatbelt. Why? Because without wearing a seatbelt, there is a very small but somewhat greater risk (vs. not wearing a seatbelt) of a very serious injury, or even death, should the car be in a major accident. There is also a small but somewhat greater risk of a minor injury should the car be in a fender-bender. And significantly, there is no downside to wearing a seatbelt. None. So wearing a seatbelt is a safety precaution we can all take that has no impact on our lives, other than providing this extra level of safety.
That is in no way similar to having a prophylactic bilateral mastectomy. A PBMX will impact your life. In the short term, it is major surgery with all the inherent risks of surgery, including a very very tiny risk of death or permanent damage. After the surgery, some people have little pain and recover quickly; others have significant pain and take longer to get back on their feet. Longer-term, with or without reconstruction, your life will be affected. There will be some loss of feeling in the chest area and a loss of sexual sensation in the breasts, which doesn't bother some women but significantly affects others. There might be on-going pain or discomfort whether from the surgery (post-mastectomy pain syndrome, for example) or from reconstruction. There might be body image concerns. There might be frustrations either with the reconstruction or with being flat and/or using prostheses. While many and probably most are happy with (or learn to live with) their decision to reconstruction or not, on this site there is no shortage of women who've decided to deconstruct or change the type of reconstruction, or who decide to reconstruct after being flat for years. The post-BMX issues might be small and easily manageable, outweighed by the relief at having had the surgery, or they might be significant and problematic.
A PBMX is nothing like wearing a seatbelt.
As for the odds, the lifetime odds of dying in a car accident (in which one is a car occupant) is 1 in 572, or 0.175%. Those are the current odds, with most people using seat belts. Based on the number of lives estimated to be saved annually by seatbelts and doing a quick calculation, the lifetime odds of dying in a car accident, if not wearing a seatbelt, is approximately 0.5%. Odds Of Death By Selected Cause Of Injury Seat Belts Save Lives
The lifetime odds that a woman will die from breast cancer is 1 in 38, or 2.6%. This is an average for all women, blending together everyone, including those who have very little risk and those who are extremely high risk (BRCA1, for example). With LCIS, I would estimate that your risk is somewhat higher than average. How Common is Breast Cancer?
Therefore, being female, your risk of dying from breast cancer, whether or not you have LCIS, is much greater than your risk of dying in a car accident, whether or not you wear a seatbelt. It's an apples and oranges comparison, as is the comparison of any preventative measure you might take to reduce the risk of a breast cancer death versus reducing the risk of a car accident death.
With LCIS, it is not unreasonable to consider what preventative actions you may want to take to reduce your breast cancer risk. With LCIS, is it not unreasonable to consider a PBMX as being one of those possible actions. But comparing a PBMX to wearing a seatbelt? There is no comparison.
Apr 5, 2019 01:56PM - edited Apr 5, 2019 02:02PM by ABeautifulSunset
Apr 5, 2019 06:37PM - edited Apr 5, 2019 08:36PM by Lea7777
AliceBastab, I am very sorry for this difficult news you just received and wish you the very best with your treatment.
Bessie, that .5% figure for no seat belt usage is something I could not find. Thank you for spending the time to share that, and your other thoughtful and helpful remarks.
Apr 21, 2019 06:46PM jessie123 wrote:
Lea777 --- how was your LCIS diagnosed? They didn't see mine on ultrasound or MRI, yet after lumpectomy it was part of my pathology report along with my ILC. There's a chance that it's in my other breast also or maybe even more in my operated breast. For some reason I'm not too worried. It the LCIS becomes invasive I'll deal with it again with a mastectomy. If it becomes invasive it will be found early since I'll be monitored so closely for the rest of my life. Personally I would never have a BMX unless absolutely necessary.
Apr 21, 2019 08:27PM vlnrph wrote:
No one dies of LCIS or any breast cancer which remains localized. It's only when metastatic disease enters the equation that you have something to worry about. Undoubtedly you were all taking that fact into account.
Electing to undergo risk reducing mastectomies does not mean you have escaped. Since not all tissue can be removed, there is still a small chance of tumor formation. So, to call those surgeries prophylactic or preventive is a bit misleading.
Data collection in the US is abysmal. There is no tracking of how many diagnosed at an early stage eventually progress or when that occurs. SEER statistics have severe limitations due to this complete lack of follow-up.
Apr 22, 2019 05:59PM - edited Apr 22, 2019 06:04PM by Lea7777
Jessie123, My LCIS was diagnosed after an excisional biopsy. That is good you are not too worried as it does nothing to help!
Vlnrph, You have some colorful icons that look like you enjoy playing a a stringed instrument (which I believe is a violin upon further investigation), have a poodle or some kind of dog, a happy family of youngsters, and maybe do skateboarding? What's that yellow and red thing? You are correct that I am looking down a road I hope never travel that could include diagnoses, post LCIS. The stated odds of breast cancer after PBMX are 90%-95%, I believe. I have been told by oncologists that it is more likely 97%-99%. But not 100%. About 25% of even early stage cancers eventually spread and that is what worries me. Thanks for your comments.
I have reconsidered the "skateboard" and believe it is a capsule, in line with your profession! Best wishes in your work and your continued health.
Apr 23, 2019 12:38PM vlnrph wrote:
Good deductive reasonin work Lea: I like your butterfly avatar. Maybe I'll find one to add to my signature row. It is a symbol for LE and also our local BC support group.
No skateboarding or other 'extreme' sports for me since my five level lumbar fusion last summer...
As my user name hints, I am a retired pharmacist and have played violin for over half a century. The little blond boy in the icon is now 30 years old and our white poodle died in 2011 just after I got done with chemo. Plus, I'm half Finn!
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