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Medical Forum / Diseases and Disorders / Breast Cancer / November 2003what can we expect?
my sister in law has been diagnosed with stage four breast cancer. she is not giving out any more info than that. i have been through breast cancer with my best friend, so i know a little about the disease. what i don't know is what to expect. my sister in law has refused to have a port put in, so i'am assuming, right or wrong, i don't know that one of two things is going on here. either she is aware there is nothing that can get rid of the cancer, or only slow it down so she has decided to go with quality rather than quanity of life, or it could be cured with minimal chemo? does that sound right to anyone out there? it's been my experience that stage four cancer is as bad as it gets, and it's usually the last stage, am I right on that? could she be in denial? we just don't know what to do or what to expect. any suggestions? Hugs, Jill > my sister in law has been diagnosed with stage four breast cancer. she > is not giving out any more info than that. i have been through breast [quoted text clipped - 8 lines] > the last stage, am I right on that? could she be in denial? we just > don't know what to do or what to expect. any suggestions? Hello Jill, Tim will be around shortly. I'm from alt.support.cancer I'm sorry to hear about your sister in law. In stage IV, the cancer has spread to other organs of the body, most often the bones, lungs, liver, or brain. Unless she's depressed, what I'm hearing is that she's chosen quality of life over treatment. There is no cure for Stage IV. What to expect (symptoms etc) depends on which organ(s) have been affected, if she's now "end stage" and other possible health conditions she might have. Time? again depends on the details and I'd rather discuss that on the other newsgroup. If she's end stage, it might be comfier for everyone if you post on alt.support.cancer We can be there for you for support and perhaps even answers as to what to expect, if you find out more information. Perhaps she'll open up to someone else in the family or friend? We have an expert in palliative care and other resources also. Hugs J PS Also http://www.acor.org/ has mailing lists for breast or metastatic cancer, if you prefer. > > my sister in law has been diagnosed with stage four breast cancer. she > > is not giving out any more info than that. i have been through breast [quoted text clipped - 12 lines] > > Tim will be around shortly. Well, that's true enough. As J says, stage IV is secondary cancer and is rarely cured so is considered terminal. A few percent do get a long term remission. Treatments are mostly 'palliative', that is designed to minimise symptoms for as long as possible and offer the best quality life rather than to try to cure the disease. It may well be that there is no treatment recommended at this point. The evidence does not show any advantage in going in guns blazing, it generally makes for poor quality of life now and not much gain later. What treatments might be available, or might be options in the future depends on what organs it has spread to. I can talk the hind legs off a donkey on bone mets., others are more knowledgeable on lung, brain, etc. J raised the question of time, which everyone wants to ask, but then ducked it. It is difficult to answer because the range is so wide. I can say it is usually more than six months and less than ten years, and typically two or three years. We talk about "quality life years", that is the number that the oncologists are trying to maximise. Treatments, particularly chemotherapy, have a trade-off between the loss of quality life now due to side effects versus the gain in symptom-free period or overall survival. This demands some psychological adjustment on the part of the patient and the caregivers. This is not the time to be investing in a long term savings account. If there are things she 'always wanted' to do, now is the time to do them if possible. The general ability to enjoy life tends to go downhill from here. Now it is time to forget cancer as much as possible and get on with living for today. Cancer will become a daily part of life all too soon. Off course it is also a good time to get things tidied up for leaving life just in case it comes out on the short side, making a will, for example. It gets hard to concentrate, and impossible to sign legal documents, when you are in the late stages. When my wife (died March 2000) became bedridden, she took a laptop and wrote her memoirs and annotated a pile of photographs so that there would be something for the children to look back at when they were older. You might find some useful information on our FAQ at www.cancersupporters.com. The FAQs for alt.support.cancer and for alt.support.cancer.breast are there, also biographical web pages for some of the contributors to a.s.c.b. Tim Jackson Tim, Thank you for the info. I guess the cancer has spread to her lungs, so I guess there probably isn't much that can be done for her. Again, thank you. Hugs, Jill > I can talk the hind legs off a donkey on bone mets., others are more > knowledgeable on lung, brain, etc. [quoted text clipped - 3 lines] > is usually more than six months and less than ten years, and typically two > or three years. Tim, I wasn't ducking..honest ! Sometimes on asc, we can be a little more precise on that, depending on the details. Here's some for instances: A 45 year old who has taken care of themselves (no smoking, no drinking), ate healthy, no other known health issues, would probably be your "two to three years" or more. A 45 year old who has "partied" a lot and has liver cirrhosis (and/or taken heavy-duty pain meds for years for other health reasons) and multiple or large liver mets, the picture might be bleaker than even your "six months". And helps us to tell them or their loved ones, what to expect for signs and symptoms too. Ditto for an 83 year old who has some lung mets, but has heart/circulatory problems, overweight and diabetic. Ditto an 83 year old who has severe osteoporosis and bone mets. Bone mets don't kill, but fractures can land them in hospital and/or non-ambulatory, where they're at risk of developing pneumonia and expiring rather quickly, not from the cancer, but what I call "other health issues". Actually we had a male lung cancer patient around Christmas last year who was dxd as a result of a spine fracture and expired within IIRC a month..not from the cancer. In this instance, we know little more at this point except she has some mets in the linings of her lung(s). In fact, I just realized we don't even know what type of breast cancer she has. Hopefully I'm redeeming myself with you, without upsetting other posters here too much. J > > J raised the question of time, which everyone wants to ask, but then ducked > > it. It is difficult to answer because the range is so wide. I can say it [quoted text clipped - 4 lines] > Sometimes on asc, we can be a little more precise on that, depending on the > details. True, but you didn't offer any answer at all. When I wanted to know this, everyone I talked to had the same response, "Well it all depends". That isn't an answer. I found I had to phrase my questions very carefully like "What is the median survival time for people with mets to bone", adding that I understood the standard deviation might be as much as 30%-300%. They could answer that, as a "technical statistic", I think because they could parrot figures and felt they couldn't be held responsible if I went off and misinterpreted it. So I think it is better to say what answer, however vague, the available information gives us. Sure, we don't know jack here, for all we know this is a highly advanced case of undiagnosed primary presenting with pneumonia-like symptoms and a week to go, or it may prove highly responsive to say hormone therapy and go walkies for the next twenty years, but neither happens very often. What I am trying to do is describe in layman's terms the shape of the statistical distribution (as I see it) that the information given implies. Sure the distribution has tails, and statistical tails have real people in them who suffer (or don't) real illnesses. Some maybe 4% get long term remission, but that is little solace to the majority who don't. If more information appears then people better informed that I can give more precise prognoses. I pride myself on being better than most at dealing with "vague". Jill has now added that this is mets to lung, which eliminates a lot of the longer survival cases from the population and brings the median down, I don't really know where it lands but I imagine something like a year or eighteen months. I have a sneaking feeling here that we might be talking about an undiagnosed primary - Jill makes no mention of her sister-in-law having "had" bc or of previous surgery - in which case my figures are still rather optimistic, but on the other hand there pretty much has to have been some mentionable intervention to diagnose metastatic bc to lung so that all remains "unknown". Undiagnosed primary affects the worst-case end of the statistics, we are then talking about weeks rather than months as the worst case, as you rightly point out, because we then don't have any handle on the history of the cancer. Tim Hi J, Thanks for your info too! She told us it has spread to the lining of her lungs. Getting info from her is like pulling teeth, but I suspect she will come around and let us know as much as she does when she is ready to deal with it. Again, thank you. Hugs, Jill > Hi J, > Thanks for your info too! She told us it has spread to the lining of [quoted text clipped - 4 lines] > Hugs, > Jill There are some one-shot treatments to prevent fluid from accumulating between the lungs and the chest wall. If there is fluid, or if it develops later, those will usually improve uality of life without too much misery and do not require a port. >my sister in law has been diagnosed with stage four breast cancer. she >is not giving out any more info than that. i have been through breast [quoted text clipped - 8 lines] >the last stage, am I right on that? could she be in denial? we just >don't know what to do or what to expect. any suggestions? Hi, Jill - I'm in here late but better late than never, I guess. My wife is currently one of the ~4% Tim mentioned (furiously knocking on wood). She was diagnosed in late 1999 with mets to her lungs and to lymph nodes under her breastbone. Quality of life right now is very high - outside of a case of lymphedema that causes problems occasionally Deborah gets her port flushed once a month, has a chest x-ray, tumor marker tests and sees her oncologist every other month and gets a chest CT and a bone scan twice a year. Depending on the pathology of her tumor there might be some things they can do - although first-round chemotherapy for bc is no picnic it is doable - and the one thing I am certain of is that most people don't know what advances have been made in the last ten or fifteen years. Chemotherapy is unpleasant but for most people is pretty well tolerated these days. It's true, Stage IV breast cancer is serious - and if your sister-in-law decides to go for quality of life instead of quantity all you can do is support that decision - but what I'm hearing is a decision based on fear. Not a good way to make decisions. She's probably not gonna get over that fear listening to a buncha faceless people in a newsgroup - she needs someone who's walked the walk who can tell her it's not that bad. I strongly recommend a local support group - her oncologist's staff can probably get her connected with one. Once she has all the *facts* if she still refuses treatment all you can do is support her decision. But - it seems to me like she's making a decision without the information she needs to make it. Hang in there - if there's anything we can do just holler.  Signatureallan spammers can reach me at abuse@localhost humans can reach me at wizard at pointbeing dot com >> But - it seems to me like she's making a decision without the > information she needs to make it. > > Hang in there - if there's anything we can do just holler. and to Tim and Sandy...thanks so much for keeping the responses in this forum. The question was in regards to breast cancer....and that's what we need to deal with here. Not all answers are comfortable to all, but we've survived loss and hearts aching at loses before. To you Jill, Hugs!!! as you deal with a tough situation in your family! Jerry > and to Tim and Sandy...thanks so much for keeping the responses in this > forum. The question was in regards to breast cancer....and that's what we > need to deal with here. I don't think J is really here trying to poach customers. But you never know. <g> Tim > My wife is currently one of the ~4% Tim mentioned (furiously knocking > on wood). She was diagnosed in late 1999 with mets to her lungs and [quoted text clipped - 3 lines] > x-ray, tumor marker tests and sees her oncologist every other month > and gets a chest CT and a bone scan twice a year. Allan, this is the first time I've seen Deborah mentioned in ages and I've very pleased to read about her. Thanks, and warmest hugs to both of you. Mary > Allan, this is the first time I've seen Deborah mentioned in ages and I've > very pleased to read about her. > > Thanks, and warmest hugs to both of you. Hugs back, Mary - she's doing just fine. I quit smoking last weekend and haven't had a cigarette in eight days. Except for being a bit grouchy at times I'm doing pretty well :) allan wrote: > I quit smoking last weekend >and haven't had a cigarette in eight days. Except for being a bit >grouchy at times I'm doing pretty well :) CONGRATUATIONS! I quit 10 years ago after smoking 2 packs a day for 25 years. My sons, then 7 and 10 asked me to do it. They told me that they didn't want me to die. (Who knew that three years later I'd get a BC diagnosis.) The first three weeks were the worst. I substituted unshelled pistachio nuts. That kept my hands busy but also allowed me to gain a few pounds. I also found that sturdy, hollow, coffee stirrers satisfied the oral need since I could draw on them, simulating smoking. (Sounds gross in retrospect, but it worked.) I kept a cup of them in the car, next to the phone, on my desk at work. Today, I cannot ever imagine smoking again. I smell the people who get on the elevator after smoking on the way to work or get behind a smoker at the ATM. Ick. Keep up the good work! Take care. ...lisa Allan wrote << I quit smoking last weekend and haven't had a cigarette in eight days. Except for being a bit grouchy at times I'm doing pretty well :) Fantastic...Wow, that is probably one of the toughest changes, albeit most helpful and important, that one can make in ones' lifetime. Congratulations!!! > my sister in law has been diagnosed with stage four breast cancer. she > is not giving out any more info than that. i have been through breast [quoted text clipped - 3 lines] >> Hugs, > Jill Hello Jill: I too have stage IV breast cancer with met to the liver. I have been dx for two and one half years. I was on chemo for a year and one half and it was found that I was hormone positive to estrogen which put me in a different category (although still stage IV) I was placed on arimidex which for me is a breeze. It is a tiny little pill that must be taken daily. Truthfully if there are side-effects, which I know there are, I do not realize it as I have many symptoms from Multiple Sclerosis which I have had for over 30 years. There is no known cure for MS, neither is there for BC. But we all have choices and mind is to live. We, my husband and I recently located to Florida where I bask in the sunshine and are quite active in our clubhouse where we have dances, theater etc. Although I am aware of my situation, I have never felt better! Perhaps you might make certain hat she is under the supervision of a competent oncologist. Regards, Laura K.* I'm out of estrogen-and I have a gun! See if she can find a local Gilda's Club in her area. Try to get her to go to the cancer patient group. Membership is free, you just fill out a one page form. Membership is free to family too, and there are support groups for them too. They offer great support groups, she can meet friends who are going through something similar. Gilda's also has a workout room, and quiet rooms where you can think, work on a computer, or lie down and take a nap (they even have blankets and pillows there for ya.) There are also plenty of bathrooms on each floor for people who don't feel well. In most bathrooms there is a chair, so you don't have to sit on the floor while contemplating the "porcelain throne". They also have candles in the bathrooms for a calming effect. They also have a library where you can sign out books, or just sign out audio CDs with relaxing music. The people there are very supportive. Signature"Tis better to be thought a fool than to open your mouth and remove all doubt." |
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