Definition of "Medically Necessary"
All: Trying to read lots of reliable information in deciding on lumpectomy/rads/AI vs. CPM (I have ALH, LCIS, strong family history, and heterogeneously dense breasts). It occurred to me to check insurance guidelines for "medically necessary" PBM. Have checked two insurance sites so far (not my own yet), and I seem to meet the criteria (e.g., "one first-degree relative with BC dx'd at any age, plus one second-degree relative dx'd at any age, plus two relatives with ovarian cancer").
Question is, do insurance companies use hard data re: actual cancer occurrence/recurrence to set this coverage? In other words, if they are willing to pay for a PBM for me, does this mean this is considered by the "industry" a reasonable treatment choice for me? Have read that PBM (mine would actually be a contralateral prophylactic) is dramatically on the rise, and that many women with and even without a BC dx are taking this route without medical necessity.
Ladies, I bring huge fear to my current dx due to my late husband's lost battle with a brain tumor, and my brother-in-law being diagnosed with melanoma last year -- three separate spots -- with an unknown primary. Huge uncertainty and fear. I just don't know whether I am being driven by stark fear, or whether I am truly evaluating my risk and comparing effectiveness of treatment options. All thoughts so welcome.
Comments
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Girl, I can't answer your insurance question, although I am pretty sure each company likely has their own guidelines on prophylactic surgery and medical necessity, but I do have experience with BMX - I acted out of stark fear but I don't regret it. I do not have a family history. For me it was psychological necessity as opposed to medical necessity and I believe that is rational thought. I did not wait for my genetics testing before making a decision, I knew what I wanted to do. Will the genetics testing really sway your decision? Nothing puts your risk to zero but BMX seemed as close as I could possibly get. That decision gives me as much peace of mind as can be afforded under the circumstances. I have had an easy recovery, no problems or complications, and have my exchange next week but I realise this is not true for everyone.This is such a personal thing, and such a hard decision - you'll find positive thoughts for each camp - lumpectomy and MX, but in the end it is down to us, our own decisions.......and that is a tough one, especially when you couple that with fear.
BTW, your oncologist post was disappointing, telling you off like that! Shocking.
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I don't know about insurance either, but am copying over a post by Beesie, one of our resident experts. It gives a good, non-judgmental look at treatment options:
"Some time ago I put together a list of considerations for someone who was making the surgical choice between a lumpectomy, mastectomy and bilateral mastectomy. I've posted this many times now and have continued to refine it and add to it, thanks to great input from many others. Some women have gone through the list and decided to have a lumpectomy, others have chosen a single mastectomy and others have opted for a bilateral mastectomy. So the purpose is simply to help women figure out what's right for them - both in the short term but more importantly, over the long term.
Before getting to that list, here is some research that compares long-term recurrence and survival results. I'm including this because sometimes women choose to have a MX because they believe that it's a more aggressive approach. If that's a big part of someone's rationale for having an MX or BMX, it's important to look at the research to see if it's really true. What the research has consistently shown is that long-term survival is the same regardless of the type of surgery one has. This is largely because it's not the breast cancer in the breast that affects survival, but it's the breast cancer that's left the breast that is the concern. The risk is that some BC might have moved beyond the breast prior to surgery. So the type of surgery one has, whether it's a lumpectomy or a MX or a BMX, doesn't affect survival rates. Here are a few studies that compare the different surgical approaches:
Lumpectomy May Have Better Survival Than Mastectomy
Now, on to my list of the considerations:
- Do you want to avoid radiation? If your cancer isn't near the chest wall and if your nodes are clear, then it may be possible to avoid radiation if you have a mastectomy. This is a big selling point for many women who choose to have mastectomies. However you should be aware that there is no guarantee that radiation may not be necessary even if you have a mastectomy, if some cancer cells are found near the chest wall, or if the area of invasive cancer is very large and/or if it turns out that you are node positive (particularly several nodes).
- Do you want to avoid hormone therapy (Tamoxifen or an AI) or Herceptin or chemo? It is very important to understand that if it's believed necessary or beneficial for you to have chemo or take hormone therapy, it won't make any difference if you have a lumpectomy or a mastectomy or a bilateral mastectomy. (Note that the exception is women with DCIS or possibly very early Stage I invasive cancer, who may be able to avoid Tamoxifen by having a mastectomy or a BMX.)
- Does the length of the surgery and the length of the recovery period matter to you? For most women, a lumpectomy is a relatively easy surgery and recovery. After a lumpectomy, radiation usually is given for 6 weeks. A mastectomy is a longer, more complex surgery and the recovery period is longer.
- How will you deal with the side effects from Rads? For most patients the side effects of rads are not as difficult as they expected, but most women do experience some side effects. You should be prepared for some temporary discomfort, fatigue and skin irritation, particularly towards the end of your rads cycle. Most side effects go away a few weeks after treatment ends but if you have other health problems, particularly heart or lung problems, you may be at risk for more serious side effects. This can be an important consideration and should be discussed with your doctor.
- Do you plan to have reconstruction if you have a MX or BMX? If so, be aware that reconstruction, even "immediate" reconstruction, is usually a long process - many months - and most often requires more than one surgery. Some women have little discomfort during the reconstruction process but other women find the process to be very difficult - there is no way to know until you are going through it.
- If you have a MX or BMX, how will you deal with possible complications with reconstruction? Some lucky women breeze through reconstruction but unfortunately, many have complications. These may be short-term and/or fixable or they may be long-term and difficult to fix. Common problems include ripples and indentations and unevenness. You may have lingering side effects (muscle pain, spasms, itching, etc.) on one side or both (if you have a BMX). If you don't end up with symmetry (symmetry is not a sure thing by any means, even if you have a bilateral mastectomy with reconstruction done on both sides at the same time), will you regret the decision to remove your breasts or your healthy breast? Are you prepared for the possibility of revision surgery?
- How you do feel about your body image and how will this be affected by a mastectomy or BMX? A reconstructed breast is not the same as a real breast. Some women love their reconstructed breasts while some women hate them. Most probably fall in-between. Reconstructed breasts usually looks fine in clothing but may not appear natural when naked. They may not feel natural or move naturally, particularly if you have implant reconstruction. If you do choose to have a MX or BMX, one option that will help you get a more natural appearance is a nipple sparing mastectomy (NSM). Not all breast surgeons are trained to do NSMs so your surgeon might not present this option to you. Ask your surgeon about it if you are interested and if he/she doesn't do nipple sparing mastectomies, it may be worth the effort to find a surgeon who does do NSMs in order to see if this option is available for you (your area of cancer can't be right up near the nipple).
- If you have a MX or BMX, how do you feel about losing the natural feeling in your breast(s) and your nipple(s)? Are your nipples important to you sexually? A MX or BMX will change your body for the rest of your life and you have to be prepared for that. Keep in mind as well that even if you have a nipple sparing mastectomy, except in rare cases (and except with a new untested reconstruction procedure) the most feeling that can be retained in your nipples is about 20% - the nerves that affect 80% of nipple sensation are by necessity cut during the surgery and cannot be reconnected. Any breast/nipple feeling you regain will be surface feeling only (or phantom sensations, which are actually quite common and feel very real); there will be no feeling inside your breast, instead your breast will feel numb. For some, loss of breast/nipple sensation is a small price to pay; for others, it has a huge impact on their lives.
- If you have a MX or BMX, how will you deal emotionally with the loss of your breast(s)? Some women are glad that their breast(s) is gone because it was the source of the cancer, but others become angry that cancer forced them to lose their breast(s). How do you think you will feel? Don't just consider how you feel now, as you are facing the breast cancer diagnosis, but try to think about how you will feel in a year and in a few years, once this diagnosis, and the fear, is well behind you.
- If you have a lumpectomy, how will you deal emotionally with your 6 month or annual mammos and/or MRIs? For the first year or two after diagnosis, most women get very stressed when they have to go for their screenings. The good news is that usually this fear fades over time. However some women choose to have a BMX in order to avoid the anxiety of these checks.
- Will removal of your breast(s) help you move on from having had cancer or will it hamper your ability to move on? Will you feel that the cancer is gone because your breast(s) is gone? Or will the loss of your breast(s) be a constant reminder that you had breast cancer?
- Appearance issues aside, before making this decision you should find out what your doctors estimate your recurrence risk will be if you have a lumpectomy and radiation. Is this risk level one that you can live with or one that scares you? Will you live in constant fear or will you be comfortable that you've reduced your risk sufficiently and not worry except when you have your 6 month or annual screenings? If you'll always worry, then having a mastectomy might be a better option; many women get peace of mind by having a mastectomy. But keep in mind that over time the fear will fade, and that a MX or BMX does not mean that you no longer need checks - although the risk is low, you can still be diagnosed with BC or a recurrence even after a MX or BMX. Be aware too that while a mastectomy may significantly reduce your local (in the breast area) recurrence risk, it has no impact whatsoever on your risk of distant recurrence (i.e. mets).
- Do you know your risk to get BC in your other (the non-cancer) breast? Is this a risk level that scares you? Or is this a risk level that you can live with? Keep in mind that breast cancer very rarely recurs in the contralateral breast so your current diagnosis doesn't impact your other breast. However, anyone who's been diagnosed with BC one time is at higher risk to be diagnosed again with a new primary breast cancer (i.e. a cancer unrelated to the original diagnosis) and this may be compounded if you have other risk factors. Find out your risk level from your oncologist. When you talk to your oncologist, determine if BRCA genetic testing might be appropriate for you based on your family history of cancer and/or your age and/or your ethnicity (those of Ashkenazi Jewish descent are at higher risk). Those who are BRCA positive are very high risk to get BC and for many women, a positive BRCA test result is a compelling reason to have a bilateral mastectomy. On the other hand, for many women a negative BRCA test result helps with the decision to have a lumpectomy or single mastectomy rather than a bilateral. Talk to your oncologist. Don't assume that you know what your risk is; you may be surprised to find that it's much higher than you think, or much lower than you think (my risk was much less than I would ever have thought).
- How will you feel if you have a lumpectomy or UMX and at some point in the future (maybe in 2 years or maybe in 30 years) you get BC again, either a recurrence in the same breast or a new BC in either breast?Will you regret your decision and wish that you'd had a bilateral mastectomy? Or will you be grateful for the extra time that you had with your breasts, knowing that you made the best decision at the time with the information that you had?
- How will you feel if you have a bilateral mastectomy and no cancer or high risk conditions are found in the other breast? Will you question (either immediately or years in the future) why you made the decision to have the bilateral? Or will you be satisfied that you made the best decision with the information you had?
.I hope that this helps. And remember.... this is your decision. How someone else feels about it and the experience that someone else had might be very different than how you will feel about it and the experience that you will have. So try to figure out what's best for you, or at least, the option that you think you can live with most easily, given all the risks associated with all of the options. Good luck with your decision!"
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Hopefully someone will come along who knows more than I do, but I seem to remember reading on these boards somewhere that once you have a mastectomy for cancer, the insurance will cover surgery on the other side aimed at restoring symmetry which often includes a BMX and reconstruction. I had a lumpectomy and my mom chose a single mastectomy with no reconstruction so I didn’t really look into it too far, but I do think that I’ve heard that - might be an angle worth pursuing for you.
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Ruthbru and Annette: Thanks for responding...wow is this stressful. Ruth, you're making an excellent point about the hard data re: effectiveness and survival, and my question is this: am I one of the relatively few women who would actually be safer with a CPM?
I've been told that my early-stage, low-grade cancer is low-risk for body spread. Negative for lymphovascular invasion, with SN to be checked. I have LCIS, which confers elevated, lifelong bilateral risk, and I have a very strong family history. I have dense tissue. So, am I actually at high risk for a second cancer of any type and grade popping up bilaterally? And if it did happen, might it be hard to see?
Have shared on other threads that I watched my grandmother (I lived with her) die of BC; I had a wonderful husband with whom I struggled for 14 years with an ultimately fatal brain tumor; and my twin sister's brother has been diagnosed with melanoma...three separate spots, with an unknown primary.
My anxiety and fear are high. Given my actual but maybe unquantifiable moderate to high risk, do I want to live with such anxiety (understanding that CPM could prevent bi-lat occurrence, but not body spread that's already happened)? I'm not sure I do. This is where Beesie's wonderful list will help.
Am going today for blood draw for genetics test. Then will try to relax a little! With hugs to you, and thanks.
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Let us know how it goes. The results of the genetic test may be especially helpful as you try to sort this all out. The 'figuring out what to do' phase is the hardest of all, I think. Once you have a plan in place, then you just do it and get it over with. Hang in there, hope you can relax a little (or do what I did, get a prescription for sleeping pills...I was about crazy from lack of sleep in the beginning and found them very helpful during that time).
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Ruth: Husband and I had extensive conversation with genetics counselor and pretty much decided two things: to table the blood test for now, and to proceed with a CPM with recon. My LCIS and strong family history, in addition to actual BC dx, are enough here. Will talk with surgical oncologist at Johns Hopkins Monday and then probably call my own BS to schedule. Hope they can get me in soon.
I do want to return to genetics counselor for the tests after I'm over first few humps of treatment. We definitely have "family cluster" going on, and want to at least check for BRCA and related things.
The sleeping pills sound fantastic!! But think I will try aromatherapy first LOL. 10 years ago, when I lost my first wonderful husband to a brain tumor, doc put me on a benzodiazepine for high cortisol, and I stayed on it too long. Finished tapering off of it about three years ago and am now trying to avoid similar situations if at all possible. But my anxiety is high, and was just thinking today that I need to put some effort into managing it better. Thanks for support...I really appreciate it.
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Glad you have been able to come to the hard, hard decision (no matter what one ends up doing, the decision making process is wrenching). I think, with your family history, it will be good idea to do the testing at some point; it might be helpful to other relatives, or even to researchers.
Hope the aromatherapy works. I did find exercise helpful for keeping sane during the day and I had some good relaxation CDs & one wonderful stress reduction hypnoses CD that definitely helped me sleep when I was further along in the experience; at first though, if I had had a hatchet in the house, I would have chopped them to pieces for all the good they did at that point. Yikes!
Hang in there!
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I use Benadryl for sleep sometimes. I take the small dose in the children's cherry chewable

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