Questions about radiation in early stage IDC
Comments
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Mollyann: Has your niece checked this out?:
http://www.herceptin.com/breast-cancer-resources/insurance.jspThe company that makes Herceptin will help fight the insurance as well as help with alternative payment for the drug
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If the exterior radiation has come such a long way why are they using internal radiation. And with that how does the internal radiation compair to the external as far as damage to the breast, heart, lungs exc. There are just so many questions we really don't have the answers to now. For me I did as much reseach as i could in the short itme i had before each procedure, but had to also trust my Dr. to at least want to do what was best for me.
Rose, yes the score moved down to 12 during the trial phase the top of the gray zone moved down as well. It moved to 25. This put me with a score of 24 at the very top of the gray zone. As MHP7 said there are many things influencing the decisions of chemo. In my case I was told it was completely up to me, but the protucol would be TCx4. So I chose TCx4. Have I made the right choice? Oh how I wish I new, I just am doing what my feelings had lead me to do.
Karen
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With a score of 24, kira, I believe you are. Onward. I survived TC just fine, and even made some realizations. Like the fact that I look WAY better with short hair, I need to work out every day, clean up my diet, and RELAX.
BC sux, but it's all how you deal with it. As my dear friend says, we are all terminal, no matter what!
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MHP70 Life is terminal. Seriously everyone is going to go sometime "terminal" illness or not. As cancer survivors we are just trying to make sure it's something else that gets us like old age. Thank goodness for treatment.
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That's exactly what I meant, Lago! That is what my friend was trying to say. I think it's a great way to free ourselves from always being burdened by cancer. People deal with illness all the time.
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MOTC, I'm trying to wrap my head around the fact that if these treatments (based on scientific studies) have none or very little value, why are they still offered? The word if being the operative. I think some people on this thread believe radiation therapy is a "tool of death" and should be avoided in every circumstance. Personally, I don't feel that way. I do believe in choice based on sound scientic evidence and trust my docs to offer or not offer a therapy having little or no value.
Mollyann, there's gotta be a piece missing from your post about why your niece can't get Herceptin approved. I know it's extremely costly but, Herceptin has an exceptional proven scientific track record, insurance companies know they must pay. It's baffling that insurance companies would allow treatments that don't prove an OS advantage fly by without a hitch and then fight us on something that does prove an OS advantage. In a sub group of breast cancers, Herceptin is considered the most "ground breaking" treatment of our time. It has paved the way that science is looking at cancer i.e. molecular targeted therapies that are improving OS. In early stage Her/2 + cancers treated w/Herceptin, it is still early to say "cure" but that's all the buzz!
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Don't get me started on her insurance company!
My own insurance company (which is great) will even cover expensive IV antibiotic therapy for Lyme Disease-- which is still controversial. Apparently, each insurance company is different.
We got a meeting with my niece's congressman and he wrote her insurance company a letter padded with info from her oncologist .
Apparently, the congressman had been asked before to write this kind of Herceptin letter. The congressman is a lawyer himself. He guesses the insurance company calculates it's financially smarter to pay off claimants denied Herceptin LATER if/when her heirs can prove Herceptin would have saved her life. But even her onc who thinks herceptin is wonderful says they can't prove survival yet. I think insurance companies are like a kind of government. They make a determination and that's it.
I'm almost afraid to write about this in public in case another insurance company sees it and decides they will also deny Herceptin.
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Many times insurance company policy is to initially turn down a claim (sometimes more than once) even though under the policy they should pay.. Since most people don't fight it then the insurance company wins.
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Mountains1day, I respect everyone's opinion, it has certainly helped me immesurably! I fall in the middle. I don't think it's in my oncologist's interest to create a sh** storm of law suits from folks dying of secondary damage issues from radiation. My father is reading all the studies like a bandit. The new radiations are really cutting down on risk, you just can't look at techniques offered in 1976 to make clear determinations on this stuff. Some studies report an overall survial benefit, others not. Just depends on which scientist you want to go with. And one must must must discuss ABSOLUTE benefit over risk. This is the essence of the question I hope to go for!
Generally speaking, the early stagers are in a grey zone. That'd be me. Hard, hard stuff.
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Hi MHP,
I haven't been on the board in quite a while, but I just wanted to share my stats with you since they're similar in some ways to yours. I was dxd at 39 and had double mastectomy with TE placement, ACT chemo, and then rads.
My tumor was 5 cm, located in inner-upper left breast, along with a suspicious intramammary node. Radiation was not bad for me- mostly I felt fatigued and had some skin burns, although not bad at all - and I'm very fair-skinned and have had many sunburns worse than the rads. I know some people have a lot more trouble with treatment than I did, but the vast majority do not, as much as some people here would like you to believe. As of now, I have no lymphedema and no loss of strength or movement from any of my treatment, and I too work mainly with my hands/arms.
I have to say I'm feeling well, NED, and all indicators including blood work, PET/CT scans, echocardiograms, etc. have all shown NO damage or lasting effects from surgery, chemo, or rads. I suspect that I do have some minor lung damage, as I still feel short of breath sometimes, but I view it as a small price to pay for having done everything possible to minimize my risk of recurrence. To me, at my age and stage in life, healthy, busy, with young children and lots more to do, the small risks were absolutely worth the huge potential of watching my kids grow up.
I'd absolutely do it all over again, and whether you choose to do rads or not, you have lots of support and company here. I'm so glad to see you questioning and researching everything so you can make the best choice for YOU. As you've seen, some people thrive on drama, conspiracy theorizing, and creating arguments, but for me breast cancer is a far, FAR scarier boogeyman than my treatment team, surgery, chemo, and radiation.
Best of luck with your decision and thanks for sharing your reasoned approach and discussion!
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Some of us are lucky enough to have the resources available in pressuring the insurance companies to receive the best care possible within the realms of what our policies will pay for. That said, I thought all insurance companies followed the same evidence based criteria to use as standard protocol in terms of paying for treatments. No?
Mollyann, I'm sorry your niece is having such a problem with getting Herceptin paid for. Rarely, do I hear of this. (although, I did hear of case when a woman presented with a only a .5 node negative/her/2 + tumor who's insurance refused to pay because the threshold for Herceptin started at .5 and above) Insurance companies know very well about the survival benefits of Herceptin confirmed by two pivotal studies that proved a response rate of 40% for metastatic bc and 50-52% reduction in recurrence in an adjuvant setting. The loss of a life due to being denied treatment that's been well documented to have been otherwise saved, would be far more costly for all parties. Also, I would question your neice's oncologist about the actual survival benefits for Herceptin users. Had he/she looked at recent ASCO findings? Currently, most Herceptin users for early bc are just now passing the 5 year mark with flying colors! Anyway, the best of luck to your niece.
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Thenewme has laid things out nicely. I know I get angry when I feel people are misrepresenting information in a way to persuade someone to do or not do a treatment. I think it is right and correct for folks to take the information and decide for themselves. Some people are willing to take on more risk for a small percentage of increased survival chances. That would be me. Some people will take on a greater risk of recurrence in order to avoid certain side effects. I understand and support that.
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While I certainly don't think insurance companies are infallible, Mollyann, are you sure there's not another reason your niece is being denied coverage for Herceptin? Maybe something in her specific case makes a difference. I don't know her medical history, but maybe Herceptin is not indicated for her unique situation? For example, Herceptin is not used at all for triple negative BC, so even if my doctor wanted to "try it" just in case, my insurance company would likely not approve it. It does, indeed, seem that there's something missing here.
That being said, if you or she or her doctors can come up with enough supporting evidence and research-based facts about the benefits of survival in her circumstances, chances are good that the insurance company decision could be successfully appealed. Best of luck.
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If radiation therapy only increases my odds to be alive in 10 years by 1%, I wouldn't do it. Would you? Furthermore, I would appreciate my doctor not recommending it and appreciate my insurance company in denying me coverage. Imagine an insurance company denying coverage for the right reasons?
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Mountains, my niece fits all the criteria for a Herceptin treated patient. The insurance company has said we could appeal it and we have, but I have a feeling it is the same guy rubber-stamping the refusals.
What drives me crazy is my niece and her husband are middle class people. In a nearby state, Medicaid covers Herceptin for poor people immediately. One of their options is divesting themselves of their assets to qualify for medicaid in a nearby state. This may sound nuts, but they are desperate.
Getting back to radiation, since there was no overall survival value, I chose to pass. Maybe, it's because I'm older, I thought I would take my chances with a one in ten chance of local recurrence that wouldn't kill me anyway according to the evidence.
Our personalties are so different, sometimes people just like the comfort of doing a lot of things, whether they're effective or not. It adds to their peace of mind. You can't knock peace of mind
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Absolutely, Mountains1day. However, I'm not sure those odds are definitive. Different studies yield different results, toxicity of new equipment has not been studied effectively. The newer studies indicate a clearer benefit to breast cancer survival and overall survival in the absence of intense cardiac damage. I believe these new studies will be cobbled together to change the Fisher take on survival, I could be totally wrong, but Fisher studies are based on 20 year projections from a time when radiation was like a nuclear blast.
Alive and quality of life issues are to be balanced. For me, the whole surgery and scare was a nuisance, a physical, and emotional trauma, and a cosmetic damage that left me unhappy. I am willing to take some risk to avoid that, even if overall survival is minimal. Quality of life is huge to me. It is why I'm also questioning Tamoxifen, because I have a life to live at 40. I refuse to extend my life just to be a shriveled up prune. My friend on Tamox can barely walk, no kidding. That's reason enough to come off of it for me.
Insurance coverage is a nuanced thing. Choice is a part of it. This is why reconstruction is covered. It is not medically necessary, rather, a huge quality of life issue. Of course I want my doctor to recommend against highly toxic and potentially incorrect methodologies. We may be a way off from that, and so, here we are. Working hard to put the pieces together ourselves.
And to that, I'd like to offer each and every one of us a "bravo". I've been talking to so many women who don't have the same access we do, who are intimidated to navigate this site, don't have time, a computer, etc. We are all very lucky to have the opportunity to discuss, to question, and to make choices.
I hope that luxury will be streamlined into fewer choices in the future!!
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MHP, I don't want to change the subject but your friend's experience on tamoxifen -- while I'm sure accurate -- is not what most people experience. I was on tamoxifen for the full five years and am now on arimidex and training for my first marathon. I got progressively stronger while on tamoxifen because I was focusing more on my running, and the drug did nothing to stop me. I was thinner and in better shape after my five years than when I started.
Obviously not everyone has my experience. But I think you need to look further than your one friend's experience. Another thing to keep in mind is to try it and if your side effects are bad, go off of it. Most of us found that the side effects disappeared after 6 months to a year.
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Thank you for the encouragement, Member! It has been hard to watch my friend. I think I wish I could have more time between treatments to adjust. Weight control, strength, and a host of other SEs have been a struggle.
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MHP70,
I, too, would like to reinforce that one's experience on Tamoxifen can vary greatly from the next. Since Tamoxifen has been around sooo long and has a proven track record, it may be wise to at least try it. And like MOTC said, if your quality of life issues start outweighing the benefit, you can ditch it! How great is that, to be able to stop and reverse treatment side effects, unlike radiation and chemo decision factors. Bravo to you!
Mollyann,
If your niece fits the criteria for Herceptin use and as most of us are middle class users, I'm sure it's just a matter of time until it's approved for her. Have you checked out the Her2support group yet?......those gals really know their stuff! Please let us know how she makes out.
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Thank you, MarieKelly! Your comments are right on. I have been searching the internet for information since my diagnosis on 9/24/10 (IDC, 1.4cm, ER and PR +, Her-, grade 1, zero lymph node involvement) and had discovered the exact same studies that you cited. When I first met with a BC surgeon, she rattled on about how basically my choices for treatment were lumpectomy + rads or mastectomy (with identical overall survival outcome) and then I 'd take a pill for 5 years and it would be no big deal. Well, it is a big deal, from all the confusion and fear surrounding the initial diagnosis to the stress and uncertainty of accepting the "standard of care" treatment options that are rattled off by the docs with no details of the potential life threatening side effects of these treatment options. I have discovered that radiation creates increased risk for colateral recurrance, not to mention the long term effects which may also be recurrance. I am 63 and in great health and take no drugs currently and never have.. not birth control, not HRT, not nothing. As I plan to live into an advanced age I am very concerned with the long term effects of radiation. I have decided not to have any radiation. As for the hormone therapy (Tamoxifen) which is given like candy to so many women I will have none of that either. It is a dreadful poison drug and with side effects like DEATH due to deep vein thrombosis, uterine cancer and stroke, etc I will take my chances and let my own immune system fight any rogue cancer cells in my body, just as it has done for 63 years. I might add that my husband is a cancer researcher of over 20 years and he is 100% in agreement with my decision. Every day your body fights off around 100,000 cancer events and your immune system kills those potentially deadly cells. Your immune system is compromised by radiation and chemo and hormone therapies. You cannot survive long with a compromised immune system. Mine got compromised due to and extremely stressful year, where I neglected my health, slacked off on my normal excercize , had several traumatic life events and didn't pay much attention to eating well. I am 100% confident that by making the necessary life style changes I have a better chance of preventing recurrance than all the so-called treatments combined. Of course I will be monitored closely with routine MRI's and mammograms but other than that I am done with "treatment". Good luck to you all in making the very tough choices that lie ahead.
ps.. had lumpectomy, with SNB (negative node) last week, follow up next week with my BSurgeon who, I am sure will want to refer me to a r adiologist and oncologist. I will decline further treatment and I don't want to even know what my Oncotype DX score is cause I know already that I am at low risk for recurrance based on all the other factors (tumor size, grade, etc) and it will NOT alter my plan of action.
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Hi everyone,
Now that I'm almost through my radiation treatment, I wanted to pipe in for anyone in my situation who is debating all these treatments. I have done really well with radiation, but like every woman on these boards, I take these treatments extremely seriously, and have great anxiety about what I've done to my body.
I would like to say, however, that after a ton of research, talking to friends, the Young Survivors Coalition, and my doctors (sometimes, they are the last I trust), walking away from standard treatments in a GRADE 3 tumor and UNDER 40 has no substantiated evidence for a strong alternative, and the studies showing the dangers of drugs against long-term survival do not account for this rarely studied group.
Make the choices you need to, we all do. And I think both sides have really relevant points. If you are a young woman with a grade 3 tumor, do the extra research, and ask for studies that pertain to your situation (there are a handful, and this is why the docs recommend more aggressive treatment--the studies show pretty clearly that the younger set benefits most from aggressive treatment) and recognize you are in a special group they now understand may be an entirely different disease.
I'm all for the lifestyle changes. Sadly, as a yoga practicing, thin, long-term vegetarian with no other underlying health concerns or family history (who banned parabens decades ago), it is only the Vitamin D that probably offers me any other prophylactic in addition.
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This is veering off topic, but MHP70, may I ask you about the following comment you made?
I didn't want a mastectomy. I work with my hands and arms for a living, and knew that my career would be greatly hindered by going the mastectomy route. This is where the nuance is all the difference: there is no point to 40+ years of long-term survival for me if I can't live my passion. I do sincerely believe in quality over quantity.
I too work with my hands and arms (I'm a photographer and carry very heavy equipment, and often hand-hold quite heavy lenses on my cameras)... how would mastectomy hinder working with your hands/arms? I have similar fears and for that reason, have instructed my surgeon NOT to remove or dissect any nodes, nor scrape away muscle tissue. But is there something inherent in a simple mastectomy that would cause long-term problems?
Sorry, just having a lot of last-minute pre-mastectomy freaking out.
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Hi CrunchyPoodleMama--
Don't freak out. The first rule of this game is it's totally individualized. In working with my PT and Massage Therapists, they both indicated the scarring from a mastectomy can lead to a lot of mobility issues. More scar tissue is more area for cording and other issues. My advice is to simply get yourself to a massage therapist early, so the interventions can head problems off at the pass. I will report that the cording I got from sentinel node biopsy is GONE thanks to an incredible therapist I've been seeing weekly.
I work in a studio environment where I'm lifting things pretty continuously, and they weigh more than camera equipment.
Stay vigilant with your doctors, get as much holistic interventions as you can. Keep the faith! A lot of the 20+ year survivors are mastectomy survivors, too. I think it's a great choice in the right circumstances. Good for you with the nodes, I think that's a well-informed decision based on your stage!
And thanks to all you incredible people, I had my iodine tested, am getting my D up to 60, not 30 like my onc thinks is right, and am reading, reading, reading.
Warm hugs and wishes!
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Hi, Member of the Club.
I saw your post where you said : When someone who has had a lumpectomy has a local recurrence, the treatment is mastectomy... and I would like to add something to that statement. People do get recurrances, even those who had lumpectomy + rads and/or mx. That is such a horrible fact of this disease and that is a great cause of confusion to me and others and to the researchers too, who really haven't figured out why that happens. And each and every case is different so blanket statements don't really fit too well. Anyway, my point is that having full breast radiation after lumpectomy may reduce risk of local recurrance but if/or when it recurrs, the mastectomy is needed because they can't irradiate the same tissue twice. So, those who don't get rads the first time around can certainly get lumpectomy + rads if it recurrs (depending of course on the tumor size, location, etc). the second time around... they are not destined to get mastectomies just because they had lumpectomy & no rads the first time around. I wanted to clarify that small but important point. If I am mistaken, please let me know but this is my understanding from what I have learned since my diagnosis. Best wishes to all!
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Hi,
New to this board but in need of advice whether to do rads or not. Here's my story: original dx was IDC around 4.5 cm, with 2 palpable lymph nodes. Had neoadjuvant chemo and bilateral mastectomy. Path report from the surgery showed that the leftover tumor was 1.5 cm and 1 positive node. My breast surgeon initially said I didn't need radiation because I had fewer than 3 nodes involved and a tumor smaller than 5 cm. My onc still wanted me to go consult a radiation oncologist. I consulted 2 of them. Both are recommending radiation on account of: a) my age (I'm 31), b) they found DCIS near the skin (close margin about 1 mm), c) residual disease in both the tumor and lymph node. I've been told that my regional recurrence rate is 15%. With radiation, the the likelihood is cut by half, so 7%. Survival, as has been mentioned here, is highly debatable, but I was given 3-4% survival benefit based on the assumption that 1/4 deaths could be avoided by radiation, though no hard data to support this. Now, for side effects, because I had an axilla dissection (12 nodes removed), my lymphedema risk is already at 15% (thankfully no symptoms so far). The likelihood of this will jump to 20-25% with radiation. The risk of a secondary cancer is anywhere between 1 to 10% but because of my age and that I'm a carrier of the BRCA1 gene, I'm at increased risk. And since I opted for reconstruction, there is a 40-50% chance of implant failure. If that happens I am not a candidate for the stomach flap recon (I haven't had children yet and I'm small framed), so we would have no choice to do the Lat D flap (back muscle) which carries its own risk. I've discussed all this with many people including the oncologist who initially referred me for radiation and he has since changed his mind (in favor of foregoing radiation), but my case was presented at the tumor board and the recommendation was still to do radiation. I am very interested in hearing what you ladies would recommend. Am I foolish for thinking that a 7% decrease in recurrence is too small for all the side effects I am possibly facing?
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Hi Bridetobe,
Sorry you're faced with this crappy decision!
If I'm understanding correctly, your medical oncologist now says to forgo rads but two rad oncs and the tumor board recommend doing radiation?
Do you have expanders in place now? Where do you get the 40-50% implant failure rate statistic? How far out are you from your bmx? Have you consulted with a genetic counselor about your specific risk profile? Did your oncologist explain his change in recommendation about radiation? Do you know where the node is that was positive? Are they suggesting node area radiation and chest wall too? I know, it's so much to think about and such a scary decision to have to make. Do you feel comfortable with your treatment team, and do they explain your options and their recommendations? It sounds as though your biggest concerns about rads are implant failure and lymphedema. If that's the case, are you familiar with the risks and treatments for those conditions just in case they were to happen? It seems that you've done a lot of research on the risks and benefits of skipping rads, so once you contrast that to the risks and benefits of radiation itself, you'll be able to get a plan formulated and feel more confident.
Risk versus benefit analysis is helpful, but it really comes down to personal decision and risk tolerance. I hate that you have to be here and making these choices. Best of luck to you! Whatever you choose, you'll find caring support here.
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thenewme,
Those are great questions. I will try to answer as best I can:
My PS was the first to give me the estimated implant failure rate. This was then confirmed by the second radiation oncologist I saw. Right now I have TEs in place. We have stopped the fills because of the possibility of radiation.
I have consulted with a genetic councellor. I had initially asked what he thought about skin and nipple sparing. He was okay with both procedures, saying the small increase in risk (5% recurrence) was worth the cosmetic benefits. I ended up with a nipple-sparing on the prophylactic breast but the nipple and some of the skin had to be removed on the diseased breast due to cancer cells remaining near the skin and nipple.
In the end, my oncologist felt like I did that the side effects did not warrant the benefits of radiation. He is also skeptical of the added % in survival rate, considering the lack of literature on the subject. The only 2 studies documenting this were done in the early 80s. So a lot has changed in terms of treatment since then.
I had one positive node in the axilla, but radiation would be to the breast, supraclavicular and chest wall. I was told axilla radiation wasn't very effective and had even higher risks of lymphedema. So the 20-25% risk I was quoted is excluding axilla radiation.
During my second consult, I asked the female RO to put aside her doctor's hat and tell me as a woman what she would do if she were in my shoes. She told me that she couldn't answer because she wasn't in my shoes. So I guess that's why I'm posting here: if anyone can understand you girls can.
Thanks again for all the support!
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bridetobe - I am wondering if you could do radiation to the breast area only near the margin close to the skin? Or was that section of skin removed? It's a tough call. All these choices are tough calls. I have been having trouble with my nerves and may have to make the choice to end chemo early, not completing all 6 prescribed courses. As in your situation I have insufficient information to make a really solid choice. I guess we just have to do the best we can!
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Bridetobe, you are really young. I was diagnosed at 39, and had a 2% chance of getting BC in the first place (no family history). Chemo and radiation probably only helped me 4%. The truth is, the statistics are a guide, they can't help make a "right" decision per se. I can say in my round and round and round reading on this stuff, the general thought is, the younger set should go as aggressive as possible. They benefit the most from the interventions.
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That is my impression too, the younger women do seem to benefit more.
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