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My sister's diagnosis at last
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<blockquote data-quote="Marguerite" data-source="post: 350392" data-attributes="member: 1991"><p>Thanks, Star.</p><p></p><p>Lung transplant for J - I suspect she's not on the list at the moment, because if there's even a slight chance she could recover lung function, it's better to have your own lungs rather than a transplant. But once tat improvement stops or begins to reverse, I suspect she'll be on te list pronto. But I don't know for sure, because I'm not the one talking to her immediate family. There are too many of us siblings and beyond, so we're talking through W, our sister who lives nearby. I've been sending the occasional email to brother in law but I have to keep it simple, he's not the sharpest tool in the shed. But he loves her and is doing the utmost for her, so that makes him OK in my book.</p><p></p><p>A lung transplant, if they decide to do one, would fix the problem permanently.</p><p></p><p>In my case - I'm doing OK. The post-op infections resolved with the second course of antibiotics. However, i began to develop a reaction to the antibiotic which is NOT good, it's the only one I have left. But it's the same one J was getting in hospital through a drip, so I know they can always give it to me that way if future infections ever get life-threatening. Besides, if I take the pills with antiemetics and late in the day, I might be able to keep them down.</p><p></p><p>I saw the oncologist on Tuesday. Lost my Medicare card at that clinic, they have a stupid system at reception of taking your card and saying, "Get it from me later," and it turns out they handed it to someone else by mistake. Luckily it was the one person in the clinic who knows me, she's meeting with me today to give it back to me. But she will still be without HER card! She was seeing the oncologist for her annual check-up, so they'll probably have to mail hers out to her. I'm not letting them keep it next time - even if I have to stand there and see the doctor in the foyer!</p><p></p><p>The doctor explained the treatment options. According to him, I could still choose to have a full mastectomy, it would remove the need for radiology. But my surgeon was very against taking off more, she said there would be no difference in survivability. I could also refuse radiology and also refuse the anti-hormone pills. The oncologist gave me the percentages, the pills and radiology will still considerably reduce the chances of recurrence. What we forget - one woman in 10 will get breast cancer in her lifetime. That means that for those of us who have already had breast cancer, we still have a 10% chance of it coming back, totally independently. Plus there's the (very slight so as to be almost zero, in my case) chance that the original tumour left a fragment or cell behind. That's why the other treatment.</p><p></p><p>So for now, I've opted for the radiotherapy (even though it brings a risk of the same sort of pulmonary fibrosis as J has, although I was told that if it happens, it would be a very small area and shouldn't be progressive) which will start sometime in the next few months. He said they would send me a letter, to arrive in about a week, telling me when. Plus they want me to take a particular kind of hormone pill. Tamoxifen is one kind of hormone pill, it works to block cell receptors to hormones. But the other kind blocks the body's secretion of those hormones. It's the other kind they want me on.</p><p></p><p>As for when the pills start - I've accepted a place on a research project. It doesn't change anything about my treatment, it will merely be a gathering of statistics. All that I HAVE to do, is start the anti-hormone pills when they say. The trial is randomised but not blinded. so the doctors (and I) will know what I'm taking and when, but a computer will assign me to one of two groups - take the pills at the same time as radiotherapy is happening, or start the pills after radiotherapy. Again, my letter will tell me.</p><p></p><p>In terms of my case, it won't make any difference to my long-term chances (which are greater than 99% that I won't die from breast cancer). While I'm unlikely to die from breast cancer, there is still a greater chance of GETTING breast cancer back. But the added vigilance is what prevents it being a problem when it does come back.</p><p></p><p>So after I've taken the pills for as long as I can or three months, whichever is the shorter, I can ask to change the pills or even stop them (although that's not advised). I can stop the radiation if I choose (again, not advised). Or I can walk away from it all at any time.</p><p></p><p>mother in law was talking to me on Thursday while we were out. She was complaining about how weak she still is and how much pain she is in. She's entitled to complain, she's old and has a lot of health problems. Then she began to compare her condition with mine and say things like, "But I shouldn't complain, your situation is far worse tan mine," which is her way of saying, "I feel guilty for complaining."</p><p></p><p>I told her that she had every right to complain, she had had a bad fall, really jarred everything badly, plus had two separate sessions in hospital with cardiac arrhythmias. I also mentioned J's slow recovery and the shock effect to her body of the biopsies - it's a body insult, she's had the equivalent of a mugging with stabbing, she's got chest incisions and chest drains still healing. mother in law commented that I also needed to consider shock. I said my wounds did not invade the chest wall, they were superficial and so although I had to consider the body insult, the healing was nowhere near as stressful for me.</p><p>mother in law was still talking about the emotional trauma of breast surgery, but for me, it's not an issue. Maybe it would have been if they'd had to take more, but I visualised tat cancer as a foreign body that needed to be removed in order to avoid infection spreading. I had a "whatever it takes" mood about it. It helps that husband is a darling about it, even though he's a boob man. </p><p></p><p>And maybe that's one more difference between me and mother in law - I don't have a problem looking my mortality in the face. She's terrified of it. But then, she's closer to hers than I am to mine, so perhaps I can afford to be complacent.</p><p></p><p>As far as things are physically - there is still a large hard lump under the scar on my breast, and a smaller hard lump in the armpit. I think it's due to the internal sutures and scar tissue still taking their time. But the breast has just about gone back to its new normal shape. There is a very slight dishing around one side of the scar, but in a bra (especially my usual uplift bras) you can't tell. The scar is close enough to the nipple line (but above it) that none of my low-cut tops show the scar. Not that it would stop me wearing them.</p><p>It still hurts to press on the scars, I find sometimes the way I've been sleeping hurts. So I still sleep with various cushions nearby to stuff in various places to take the pressure off. The best ones are those squooshy cushions with microbeads in them. I have two heart-shaped bright red ones, they go well with my sexy underwired red and black nightie (which, since it has a built-in uplift bra in it, it actually very comfortable for my poor sore boob to sleep in).</p><p></p><p>How do I feel about the change in appearance? Well, I am past menopause and having to accept the other changes in my body due to ageing. I've always been proud of my boobs but they've been getting very tired and saggy, so adding a scar to the look is just one more thing, rather than a big thing in itself. And when I know that the scar represents me taking control of my life and saving it, then I like the scar. It represents salvation, common sense, life, taking control. It will fade and be less obvious. I have other scars that are much bigger, and so this isn't the first. </p><p></p><p>My first scar was my appendix scar. it's only a little smaller than my breast scar. Then when I was 20, I had a chunk of kidney removed. THAT was not a small scar, nor was it pretty. I could never hide it completely in a swimsuit, not even in a one-piece. I used to tell people it was a shark bite. But it is round to the side, so I don't generally see it much in a mirror. </p><p>I was explaining this to the surgeon who asked me the same sort of question - how am I coping with it? And the surgeon went looking for my kidney scar to compare it, and said, "You can hardly see it."</p><p>Well, it was 35 years ago or more. And my body has faded it so much that the scar is almost invisible. I never thought it would be.</p><p></p><p>So this? It really is nothing.</p><p></p><p>Marg</p></blockquote><p></p>
[QUOTE="Marguerite, post: 350392, member: 1991"] Thanks, Star. Lung transplant for J - I suspect she's not on the list at the moment, because if there's even a slight chance she could recover lung function, it's better to have your own lungs rather than a transplant. But once tat improvement stops or begins to reverse, I suspect she'll be on te list pronto. But I don't know for sure, because I'm not the one talking to her immediate family. There are too many of us siblings and beyond, so we're talking through W, our sister who lives nearby. I've been sending the occasional email to brother in law but I have to keep it simple, he's not the sharpest tool in the shed. But he loves her and is doing the utmost for her, so that makes him OK in my book. A lung transplant, if they decide to do one, would fix the problem permanently. In my case - I'm doing OK. The post-op infections resolved with the second course of antibiotics. However, i began to develop a reaction to the antibiotic which is NOT good, it's the only one I have left. But it's the same one J was getting in hospital through a drip, so I know they can always give it to me that way if future infections ever get life-threatening. Besides, if I take the pills with antiemetics and late in the day, I might be able to keep them down. I saw the oncologist on Tuesday. Lost my Medicare card at that clinic, they have a stupid system at reception of taking your card and saying, "Get it from me later," and it turns out they handed it to someone else by mistake. Luckily it was the one person in the clinic who knows me, she's meeting with me today to give it back to me. But she will still be without HER card! She was seeing the oncologist for her annual check-up, so they'll probably have to mail hers out to her. I'm not letting them keep it next time - even if I have to stand there and see the doctor in the foyer! The doctor explained the treatment options. According to him, I could still choose to have a full mastectomy, it would remove the need for radiology. But my surgeon was very against taking off more, she said there would be no difference in survivability. I could also refuse radiology and also refuse the anti-hormone pills. The oncologist gave me the percentages, the pills and radiology will still considerably reduce the chances of recurrence. What we forget - one woman in 10 will get breast cancer in her lifetime. That means that for those of us who have already had breast cancer, we still have a 10% chance of it coming back, totally independently. Plus there's the (very slight so as to be almost zero, in my case) chance that the original tumour left a fragment or cell behind. That's why the other treatment. So for now, I've opted for the radiotherapy (even though it brings a risk of the same sort of pulmonary fibrosis as J has, although I was told that if it happens, it would be a very small area and shouldn't be progressive) which will start sometime in the next few months. He said they would send me a letter, to arrive in about a week, telling me when. Plus they want me to take a particular kind of hormone pill. Tamoxifen is one kind of hormone pill, it works to block cell receptors to hormones. But the other kind blocks the body's secretion of those hormones. It's the other kind they want me on. As for when the pills start - I've accepted a place on a research project. It doesn't change anything about my treatment, it will merely be a gathering of statistics. All that I HAVE to do, is start the anti-hormone pills when they say. The trial is randomised but not blinded. so the doctors (and I) will know what I'm taking and when, but a computer will assign me to one of two groups - take the pills at the same time as radiotherapy is happening, or start the pills after radiotherapy. Again, my letter will tell me. In terms of my case, it won't make any difference to my long-term chances (which are greater than 99% that I won't die from breast cancer). While I'm unlikely to die from breast cancer, there is still a greater chance of GETTING breast cancer back. But the added vigilance is what prevents it being a problem when it does come back. So after I've taken the pills for as long as I can or three months, whichever is the shorter, I can ask to change the pills or even stop them (although that's not advised). I can stop the radiation if I choose (again, not advised). Or I can walk away from it all at any time. mother in law was talking to me on Thursday while we were out. She was complaining about how weak she still is and how much pain she is in. She's entitled to complain, she's old and has a lot of health problems. Then she began to compare her condition with mine and say things like, "But I shouldn't complain, your situation is far worse tan mine," which is her way of saying, "I feel guilty for complaining." I told her that she had every right to complain, she had had a bad fall, really jarred everything badly, plus had two separate sessions in hospital with cardiac arrhythmias. I also mentioned J's slow recovery and the shock effect to her body of the biopsies - it's a body insult, she's had the equivalent of a mugging with stabbing, she's got chest incisions and chest drains still healing. mother in law commented that I also needed to consider shock. I said my wounds did not invade the chest wall, they were superficial and so although I had to consider the body insult, the healing was nowhere near as stressful for me. mother in law was still talking about the emotional trauma of breast surgery, but for me, it's not an issue. Maybe it would have been if they'd had to take more, but I visualised tat cancer as a foreign body that needed to be removed in order to avoid infection spreading. I had a "whatever it takes" mood about it. It helps that husband is a darling about it, even though he's a boob man. And maybe that's one more difference between me and mother in law - I don't have a problem looking my mortality in the face. She's terrified of it. But then, she's closer to hers than I am to mine, so perhaps I can afford to be complacent. As far as things are physically - there is still a large hard lump under the scar on my breast, and a smaller hard lump in the armpit. I think it's due to the internal sutures and scar tissue still taking their time. But the breast has just about gone back to its new normal shape. There is a very slight dishing around one side of the scar, but in a bra (especially my usual uplift bras) you can't tell. The scar is close enough to the nipple line (but above it) that none of my low-cut tops show the scar. Not that it would stop me wearing them. It still hurts to press on the scars, I find sometimes the way I've been sleeping hurts. So I still sleep with various cushions nearby to stuff in various places to take the pressure off. The best ones are those squooshy cushions with microbeads in them. I have two heart-shaped bright red ones, they go well with my sexy underwired red and black nightie (which, since it has a built-in uplift bra in it, it actually very comfortable for my poor sore boob to sleep in). How do I feel about the change in appearance? Well, I am past menopause and having to accept the other changes in my body due to ageing. I've always been proud of my boobs but they've been getting very tired and saggy, so adding a scar to the look is just one more thing, rather than a big thing in itself. And when I know that the scar represents me taking control of my life and saving it, then I like the scar. It represents salvation, common sense, life, taking control. It will fade and be less obvious. I have other scars that are much bigger, and so this isn't the first. My first scar was my appendix scar. it's only a little smaller than my breast scar. Then when I was 20, I had a chunk of kidney removed. THAT was not a small scar, nor was it pretty. I could never hide it completely in a swimsuit, not even in a one-piece. I used to tell people it was a shark bite. But it is round to the side, so I don't generally see it much in a mirror. I was explaining this to the surgeon who asked me the same sort of question - how am I coping with it? And the surgeon went looking for my kidney scar to compare it, and said, "You can hardly see it." Well, it was 35 years ago or more. And my body has faded it so much that the scar is almost invisible. I never thought it would be. So this? It really is nothing. Marg [/QUOTE]
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