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Medical Forum / Diseases and Disorders / Breast Cancer / August 2008Believe Me, You Don't Want a Lumpectomy?
I'm tired of reading about breast cancer sites called "alt.support" and would like to see more called "alt.truth." Are some of these support sites run by cancer foundations? What really upsets me about cancer is that in countries where the operations are done free, surgeons will do all they can to convince women to undergo lumpectomies versus masectomies. Therefore the less wealthy a woman is, the more likely she is to be a VICTIM of a lumpectomy. When women get lumpectomies these are cheaper for hospitals because they can boot the women out in a day. Lumpectomies also require three painful medical procedures beforehand. They will tell women that studies show that they are almost as effective as masectomies, but in actual fact they are so unsafe that women must undergo radiation for 6 weeks afterward (which I will refuse) because they are actually quite unsure that they are safe at all. The radiaition is also presented to women in lovely Santa Clause fashion -- "it won't harm you dearie. It will just make your breasts a little more perky for the rest of your life." Yeah right, it will cook them. To boot, when you get a lumpectomy, you have to get a painful sentinal node biopsy first. I also refused that one and opted for the blue dye instead because I didn't want anything that was used to detonate nuclear bombs being put into my breast regardless of the deactivation time. When you throw out your smoke detector, it has a half life of 50 years, but when this stuff has a half life of 212,000 years. They claim it leaves your body after only a few hours, but some environmental reports claim that 1/4 will always remain in your body if injested. Although I was told by the medical field that that was only with regard to injestion, surely putting it in people's lymph nodes would be far more dangerous than injestion. Wealthier women will opt for masectomies but women with lower incomes are far more likely to become VICTIMS of lumpectomies, as the medical field will twist their arms endlessly until they finally consent, because believe it or not, hospitals do want to save money in any way they can. And if they can convince you to take a lumpectomy today, maybe in 5 years these cancer operations will no longer be covered and when the cancer returns you can then sell your entire house to pay for it yourself. Women like Christine Applegate and Belinda Stronach (Canadian politician), had access to money and the best surgical advice available and both were smart enough to choose a double masectomy at the very first sign of cancer. I would rather not get the radiation now because although my breast looks OK except for a big 4-inch scar across it, plus a 1 inch cut in my armpit and is about the size of a small basketball at the moment, compared to my other breast which is the size of a grapefruit. (They didn't put drainage in so although it's quite painful it should gradually shrink.) I will forever more worry every single day about the cancer coming back. In a way I would like it to come back so I can be really adamant about the double masectomy next time and not allow them to twist my arm again so I willcontinue to have to worry every single day about cancer coming back again. Remember, these lumpectomies are still on trial. They have been doing them for 10 years and most studies try to convince women they are as safe as masectomies. However there is about a 10% chance the cancer will return because they don't take out all of the lymph nodes and might miss some that are cancerous. Studies in Denmark disagree with other studies. They claim that lumpectomies are NOT nearly as safe as masectomies. I tend to believe the Denmark studies because after having worked in research myself I am fully aware of how nearly every single study is deliberately tainted to produce the results the designers of those studies want. Don't go for the lumpectomy. It's very painful because of all the treatment required beforehand and not nearly as safe! If you are a lower income woman, be especially concerned because you are much more likely to be victimized in this way because hospitals want nothing more in the whole world than to save money. > I'm tired of reading about breast cancer sites called "alt.support" and > would like to see more called "alt.truth." Are some of these support > sites run by cancer foundations? This one isn't. > What really upsets me about cancer is that in countries where the > operations are done free, surgeons will do all they can to convince women > to undergo lumpectomies versus masectomies. Therefore the less wealthy a > woman is, the more likely she is to be a VICTIM of a lumpectomy. Here in the British National Health Service treatment is free and my surgeon certainly didn't even suggest which was the best procedure for me. In fact when I said that I knew what I wanted he said he didn't want me to tell him, he was going on holiday for a fortnight and when he came back and I'd had time to think about it he'd do what I wanted. I'm glad he gave me that opportunity, I originally wanted an all-off but after I'd thought more I chose the lumpectomy. All the other women I know who've had bc surgery (and my husband who had prostate cancer surgery) have been given the choice of the type of surgery and subsequent treatment. > When women get lumpectomies these are cheaper for hospitals because they > can boot the women out in a day. Not true in Britain, I was in the ward for five days and nights after surgery, I don't think that patients are discharged after a day even ten years later unless there are serious reasons to do it. > Lumpectomies also require three painful medical procedures beforehand. What are they? > They will tell women that studies show that they are almost as effective > as masectomies, but in actual fact they are so unsafe that women must > undergo radiation for 6 weeks afterward (which I will refuse) because they > are actually quite unsure that they are safe at all. Radiation after lumpectomy isn't always done, I've known bilateral mastectomy patients have radiation. > The radiaition is also presented to women in lovely Santa Clause > fashion -- "it won't harm you dearie. It will just make your breasts a > little more perky for the rest of your life." Yeah right, it will cook > them. As I said before, this is not the case here. And I don't believe that it's the case in all hospitals although there might be exceptions. > To boot, when you get a lumpectomy, you have to get a painful sentinal > node biopsy first. I also refused that one and opted for the blue dye > instead I think you're a little confused ... > because I didn't want anything that was used to detonate nuclear bombs > being put into my breast regardless of the deactivation time. When you > throw out your smoke detector, it has a half life of 50 years, but when > this stuff has a half life of 212,000 years. Those figures are irrelevant. > They claim it leaves your body after only a few hours, but some > environmental reports claim that 1/4 will always remain in your body if > injested. Some? Again, you're choosing who to believe. > Although I was told by the medical field that that was only with regard to > injestion, surely putting it in people's lymph nodes would be far more > dangerous than injestion. Ingestion of radioactive substances is rare but I can't see why the entry point should make a difference to residue. > Wealthier women will opt for masectomies but women with lower incomes are > far more likely to become VICTIMS of lumpectomies, as the medical field [quoted text clipped - 3 lines] > these cancer operations will no longer be covered and when the cancer > returns you can then sell your entire house to pay for it yourself. That's confused again. > I would rather not get the radiation now because although my breast looks > OK except for a big 4-inch scar across it, plus a 1 inch cut in my armpit > and is about the size of a small basketball at the moment, compared to my > other breast which is the size of a grapefruit. (They didn't put drainage > in so although it's quite painful it should gradually shrink.) I will > forever more worry every single day about the cancer coming back. Life's too short to worry about that. Be glad that your cancer was diagnosed and that something's been done about it. > In a way I would like it to come back so I can be really adamant about the > double masectomy next time and not allow them to twist my arm again so I > willcontinue to have to worry every single day about cancer coming back > again. You might think differently once you're past the worst. > Remember, these lumpectomies are still on trial. They have been doing them > for 10 years Lumpectomies have been done for many more years than that! > and most studies try to convince women they are as safe as masectomies. > However there is about a 10% chance the cancer will return because they > don't take out all of the lymph nodes and might miss some that are > cancerous. That's a simplification which confuses the issue. > Studies in Denmark disagree with other studies. They claim that > lumpectomies are NOT nearly as safe as masectomies. I tend to believe > the Denmark studies because after having worked in research myself I am > fully aware of how nearly every single study is deliberately tainted to > produce the results the designers of those studies want. Are you saying that you tainted results? > Don't go for the lumpectomy. It's very painful because of all the > treatment required beforehand and not nearly as safe! If you are a lower > income woman, be especially concerned because you are much more likely to > be victimized in this way because hospitals want nothing more in the whole > world than to save money. It's right that all publicly funded institutions *should* use tax payers' money wisely but I think that medical services want nothing more than to heal and save, or at least prolong, lives. That's been my experience anyway, in my fairly long life, which has benefited from the medical profession and latest technology. Stick around and see if others here agree with you, I assure you that this group is not linked to any cancer foundation. Mary >> In a way I would like it to come back so I can be really adamant about >> the double masectomy next time and not allow them to twist my arm again [quoted text clipped - 7 lines] > > Lumpectomies have been done for many more years than that! This group is run by the people that post here, and I've received some very good advice since I was diagnosed. All the choices were laid out before me, there was no pressure to have surgery or not to have it, and I made my decision in the time I wanted. I had a mastectomy and was in hospital in England for 2 nights only. As soon as I was diagnosed I was told it would be two nights in hospital, and so it was. Cost doesn't even enter the equation, so you have been misinformed. Am I wealthy? No, I am most definitely not. It was my choice, and no-one else's. I know of three people who have had a lumpectomy without radiation afterwards. And, my sister had a lumpectomy in the 1980s, which is a little longer than the 10 years you talk about. Not everyone is going to worry every day about their cancer coming back. Now I've had surgery, I hardly think about it. Why should I? Life is for living, and you only have one go at it. "In a way I would like it to come back". Surely not? So you can prove your point? That doesn't sound like the logical thought of a well informed woman. Splodge > "In a way I would like it to come back". Surely not? So you can prove your > point? That doesn't sound like the logical thought of a well informed > woman. it makes sense to me, she wants to get both boobs off so the fear will go away. she feels she was badly served, she feels she got 1/4 the treatment she needed and that her recurrence risk is too high. she feels (for some reason) that only more cancer would earn her the mastectomies she wanted in the first place. Fear, not cancer, is her bane. ... > Not everyone is going to worry every day about their cancer coming back. > Now > I've had surgery, I hardly think about it. Why should I? Life is for > living, > and you only have one go at it. Very well said! Mary What kind of surgery did you have? A masectomy or a lumpectomy? _____________________ > ... > [quoted text clipped - 7 lines] > > Mary .) I will >> forever more worry every single day about the cancer coming back. Worry is misuse of imagination. and if worry you must, I'm sure you would worry after a mastectomy as well. >> and most studies try to convince women they are as safe as masectomies. >> However there is about a 10% chance the cancer will return because they >> don't take out all of the lymph nodes and might miss some that are >> cancerous. It is very very very rare (I believe?) for a surgeon to remove ALL THE LYMPH NODES. Even if cancer were present in every single node, chemotherapy would be front line......in any event, the mastec/lumpec issue is irrelevant there, because nodes are removes with BOTH procedures, typically, unless there is no malignancy to begin with. >> Studies in Denmark disagree with other studies. They claim that >> lumpectomies are NOT nearly as safe as masectomies. I tend to believe [quoted text clipped - 3 lines] > > Are you saying that you tainted results? good one Mary! and yes, I do think she is saying that, but the apprised among us know research isn't pure. >> Don't go for the lumpectomy. It's very painful because of all the >> treatment required beforehand no idea what that is. there are "prep" things for either kind of surgery. > no idea what that is. there are "prep" things for either kind of surgery. This varies from woman to woman, if one had a cardiac history they may need to be cleared by a cardiologist. In some cases they take blood, do EKG, and some scans if indicated. You meet with anesthesiology to discuss the risks of general anesthesia. I think that is what she is referring to. Alex When you have a lumpectomy you go for a biopsy. Then you go for a sentinal node biopsy. Then you go to get the wire put into your breast for the markings. Then you go for the surgery. Then you're supposed to go for 6 to 7 weeks of radiation because they don't know if they got it all out, because with a lumpectomy they take out fewer nodes than they do with a masectomy. They assume they got most of it because they remove the main nodes, but can't be sure. Chemo might also be involved depending on the results. The lumpectomy is very painful, with your breast swelling the size of a small basketball. It's not good to get it done before a weekend because you have no one to ask questions to then. I'm kind of scared of all that swelling. It goes right into the back when I sleep. I'm worried about stretch marks afterward and a hanging breast from all the stretching, which is far worse than at pregnancy where you already get stretch marks from. I'm also worried about cancer recurring. >> no idea what that is. there are "prep" things for either kind of surgery. >> [quoted text clipped - 6 lines] > > Alex > When you have a lumpectomy you go for a biopsy. > Then you go for a sentinal node biopsy. [quoted text clipped - 5 lines] > because they remove the main nodes, but can't be sure. > Chemo might also be involved depending on the results. This is a fairly typical list, and apart from the guide wire can be pretty much the same for mastectomy. It varies, for example on the one hand not every lumpectomy gets a guide wire, and less mastectomy patients get radiation (although my wife did); on the other quite a lot of lumpectomy patients have to come back for further surgery (my mum did). The node dissection has nothing to do with whether it is a complete mastectomy or not. It is essentially a separate procedure, the same in both cases, and the number of nodes taken is independent of the type of main surgery. The reason for radiation after lumpectomy is because there is more risk of there being a few residual cancer cells left around the site of the operation. In larger and more advanced breast cancers radiation is given after mastectomy too. As you can see from your own description of the procedure, lumpectomy is often more complicated surgery than mastectomy, so it is unlikely that surgeons would recommend it on cost grounds, quite the reverse. I believe the main reasons for its current prevalence are cosmetic and psychological: clinically and economically, mastectomy makes more sense in many cases. Tim Jackson " because with a lumpectomy they take out fewer > nodes than they do with a masectomy. this is not a factual statement. They assume they got most of it > because they remove the main nodes, but can't be sure. every surgery is different. this is not factual either. > Chemo might also be involved depending on the results. > The lumpectomy is very painful, with your breast swelling the size of a > small basketball. no, not universally true. > It's not good to get it done before a weekend because you have no one to > ask questions to then. > I'm kind of scared of all that swelling. It goes right into the back when > I sleep. > I'm worried about stretch marks afterward you're worried about stretch marks? You had cancer and you're worried about stretchmarks? I think you just lost all of the women in this group!! LOL. and a hanging breast from all the > stretching, which is far worse than at pregnancy where you already get > stretch marks from. Have you SEEN what breasts look like after mastectomies? good heavens. > I'm also worried about cancer recurring. Worry has nothing to do with anyone else's reality. Worry is your OWN province, your own decision, your own personality type if you will. A person with a mosquito bite can worry about encephalitis; a person with an itchy scalp can worry about AIDS. >>> no idea what that is. there are "prep" things for either kind of >>> surgery. [quoted text clipped - 7 lines] >> >> Alex I never even talked to an anesthesiologist; I had a chest x-ray but they lost my medical history form. my doctor lied about how many nodes she was going to take (she looked me right in the eye in the surgical suite and promised me, but she lied). I did get lots of blood tests, natch. >> no idea what that is. there are "prep" things for either kind of surgery. >> [quoted text clipped - 6 lines] > > Alex I might give your rants more credibility if you knew the word "mastectomy." having said that, I don't agree with people who think your opinions are out of place here. I followed every word you wrote. I was surprised to read in another post that after a lumpectomy the patient stays "only a couple of days." after my mastectomy (that's masTECtomy) I stayed one night, after the lumpectomy I stayed in hospital only five hours. both times, I couldn't get out of there fast enough. > I'm tired of reading about breast cancer sites called "alt.support" and > would like to see more called "alt.truth." Are some of these support [quoted text clipped - 72 lines] > be victimized in this way because hospitals want nothing more in the whole > world than to save money. > I'm tired of reading about breast cancer sites called "alt.support" and > would like to see more called "alt.truth." Are some of these support sites > run by cancer foundations? Nobody "runs" any 'alt.' newsgroup. They are by their nature unmoderated and uncontrolled. You can't "run" one. Respect here can only be earned, not bought. As you have ably demonstrated, anyone can post whatever views they have, subject to the libel laws in their and any victim's countries. It is up to the reader to decide on the credibility of any individual post, and if they disagree strongly enough, to post their own experience or rebuttal. What's more it works. While many 'alt.' groups tend to degenerate into name-calling and flame wars, 'alt.support' groups are considered a no-go area for most trolls, and tend to have a more calm and reasoned debate. Especially this one. Tim Jackson Great to hear that Tim. I was thinking, you know I've never heard anyone from any breast cancer site tell women anything but about the wonderful results they had. You would think breast cancer was a story of glamour. Understandably they wouldn't want to scare patients, but I think that's the very thing that shocks patients. They expect all the prettyness and comfort and are shocked to discover it's a very painful process all the way through, and that they only tell you about one procedure you are going to have to undergo before you start. Oh, it'll just be a biopsy. Then they tell you, well, there's another you have to go through. It will be a sentinal node biopsy. Then they tell you, well, there's another you have to go through.. It will be a needle localization. By the time you go through all of that your breast is so sore and you're in such shock because you don't have time to recover between each one that you can hardly wait for them to chop it all off. _____________________ >> I'm tired of reading about breast cancer sites called "alt.support" and >> would like to see more called "alt.truth." Are some of these support [quoted text clipped - 14 lines] > > Tim Jackson > Great to hear that Tim. I was thinking, you know I've never heard anyone > from any breast cancer site tell women anything but about the wonderful [quoted text clipped - 10 lines] > don't have time to recover between each one that you can hardly wait for > them to chop it all off. Sure there are web sites that are promoting various commercial interests that are somewhat economical with the truth. They know better than to stick their nose in here, commercial advertising in non-commercial newsgroups is contrary to ISPs' conditions of service. Also one has to accept that doctors are human and are trained in treating disease: the need to teach doctors communication skills and bedside manner has only recently been recognised, many were trained before that time, and some never learned it. As a result one finds quite a lot of doctors who try to put a positive gloss on everything, mostly because they don't want to have to deal with a worried patient. Someone should tell them it doesn't work. If you think they are bad with primary cancers, you should see them dealing with terminal cases. At least two terminal patients I have known personally were never told by the medics that their condition was terminal! They often like to gloss over the 'dying' bit, and are afraid to commit themselves to saying something like "you've probably got 2 years" partly because most people don't understand the statistical implications of such a statement. We even had one young doctor putting her arm around a devastating bone-scan report she was reading, to prevent me reading it upside down, while she tried to pick out the 'positive' bits. That ended up with a scene, and us being transferred to another consultant. On the other hand, at the positive-mammogram stage, the attitude does have some justification, some 80% are false alarms, so it's perfectly fair to say "it's probably nothing". Also realise that patients reaction to surgery varies quite a lot, and you sound like you came at the rough end of the spectrum. Everyone gets some swelling, and most people get some pain, but what you describe sounds worse than what most people describe. It might be related to your reaction to adhesives. What I'm saying is it's a bit over-the-top to say that everyone can expect the same reaction. I sympathise with your need to sound off, and this is a good place to do it. I've been here and done that too, years ago. We hold hands to absorb and share the pain. Yes, a horror story is likely to scare the horses, and you'll quite rightly get people chiming in saying hey, it's not that bad, or even criticising you. That's fair game too, we want our readers to see all sides of the story and draw their own conclusion. Tim > Great to hear that Tim. I was thinking, you know I've never heard anyone > from any breast cancer site tell women anything but about the wonderful you are on THIS site. You must not have read any of the stories here. Not many of us have "wonderful" stories to tell. > results they had. You would think breast cancer was a story of glamour. > Understandably they wouldn't want to scare patients, but I think that's > the very thing that shocks patients. They expect all the prettyness and > comfort and are shocked to discover it's a very painful process all the > way through, and that they only tell you about one procedure you are going > to have to undergo before you start. it's up to you if you don't use the Internet. Literally everything is there. Oh, it'll just be a biopsy. Then they > tell you, well, there's another you have to go through. It will be a > sentinal node biopsy. Then they tell you, well, there's another you have > to go through.. It will be a needle localization. By the time you go > through all of that your breast is so sore and you're in such shock > because you don't have time to recover between each one that you can > hardly wait for them to chop it all off. that's just YOUR attitude. Other people find pain just part of life, no worse or better than any other sensory experience. and "chopping it all off" is not the end of pain or worry, or wouldn't be in your case. > _____________________ > [quoted text clipped - 16 lines] >> >> Tim Jackson > Great to hear that Tim. I was thinking, you know I've never heard anyone > from any breast cancer site tell women anything but about the wonderful [quoted text clipped - 10 lines] > because you don't have time to recover between each one that you can > hardly wait for them to chop it all off. ---------------- Listen, I have to jump in here. You seem to think a mastectomy would have been less painful. I had a mastectomy and it was *horribly* painful, and I had drains in me for two months, and I lost considerable range of motion in my right shoulder, and now--3 1/2 years later--I *still* have pain when I press certain areas of my chest and side. Oh, and I *still* had to have radiation (because I had a very large tumor). If you think a mastectomy is somehow easier or simpler you are simply wrong on that point. And that's without even discussing reconstructive plastic surgery or using an external prosthesis. You worry about stretch marks, but you don't even realize the extent of the disfigurement from a mastectomy. You're not seeing things clearly at all right now. Which is understandable, but you're making statements when you should be asking questions. We're here to answer them. Eva > ---------------- > Listen, I have to jump in here. You seem to think a mastectomy would have > been less painful. I had a mastectomy and it was *horribly* painful, and > I had drains in me for two months, and I lost considerable range of motion > in I tried to make the points, too, that mastectomy is anything but a walk in the proverbial park. I've been through a lot of medical stuff in my life, and it ranks maybe 7th, but it was much worse than I expected. > my right shoulder, and now--3 1/2 years later--I *still* have pain when I > press certain areas of my chest and side. Oh, and I *still* had to have [quoted text clipped - 9 lines] > > Eva I am sorry you feel the way you do, I think you are afraid. This group can be a support but it doesn't help when you post a very angry and ranting post the way you did. For the majority of women a lumpectomy is the best and least painful way to go. Mastectomies have issues of there own. Cancer is horrible but in most cases can be managed, why do try to find some common ground rather than attacking the group. Very afraid, I have to admit. The only thing I'm glad about is that I don't have a drainage tube. But I'm not sure how to relieve the swelling -- whether I should be drinking more or less or whether I should be exercising more or less or massaging it. I already went to a doctor the first day after I got back because I have a type of skin that reacts like crazy glue to bandages and was afraid of what might happen if I had to leave the steri-strips on for 6 days. I left the hospital about 17 hours after surgery but the huge bandage had to be taken off before I left. I could feel it growing into my skin so I peeled it off slowly, slowly, slowly, taking half an hour. So much of my skin came off with it, even 2 levels deep in some cases, leaving a leaking wound. They assured me that steri-strips would be different but I'm scared because I've never had them before and most bandages tear my skin off (includieng anti-allergic hospital bandages). I'm so scared of having them taken off because I fear I will lose several levels of skin by then. Crazy thing I never thought of was about getting an operation before a weekend when no one would be available to ask questions from. The first night when I went to the doctor at the clinic the wait was 4-1/2 hours, and that's a long time when you drive under the influence of heavy drugs. The drugs they give you aren't as good as the morphine but work quite well. >I am sorry you feel the way you do, I think you are afraid. This group can >be a support but it doesn't help when you post a very angry and ranting [quoted text clipped - 5 lines] > Cancer is horrible but in most cases can be managed, why do try to find > some common ground rather than attacking the group. Think of your fear as a disease more virulent than any cancer or surgery, and do research about managing it. Yoga, meditation, relaxation breathing, poetry, exercise, positive thinking, candles, tea, hot baths; makes no never mind; but ..... fear is a toxic and unproductive thing. There is no need to show clinical evidence for this, it's pretty widely known and accepted. Stop being angry with doctors and make a proactive decision to deal with your fear. It is 80% of the problem. How you talk to yourself can radically change how you react to things, and how things evolve. Life can either grind you or polish you; make it your choice. "You must do the thing you think you cannot do." Eleanor Roosevelt > Very afraid, I have to admit. The only thing I'm glad about is that I > don't have a drainage tube. But I'm not sure how to relieve the [quoted text clipped - 28 lines] >> Cancer is horrible but in most cases can be managed, why do try to find >> some common ground rather than attacking the group. > ... Life can either grind you or polish you; make it your choice. Oh I hope I remember that! Thanks, Mary My favorite is: Two men looked out from prison bars; one saw mud, the other saw stars ;-) >> ... Life can either grind you or polish you; make it your choice. >> > Oh I hope I remember that! Thanks, > > Mary I know the tape you are talking about, it does the same thing to me. Steri strips can stay on until they fall off. good one. >I am sorry you feel the way you do, I think you are afraid. This group can >be a support but it doesn't help when you post a very angry and ranting [quoted text clipped - 5 lines] > Cancer is horrible but in most cases can be managed, why do try to find > some common ground rather than attacking the group. |
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