MIDDLE-AGED WOMEN 40-60ish
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Being angry is an important part of your treatment plan. It keeps you in fight mode. We either utilize flight or fight when faced with a crisis and women are very good at fight. We actively seek doctors and treatments while men will ignore a medical issue and hope it goes away.
As for family and friends, besides your own body disappointing you, those two groups will surely let you down. My Dad died of lung cancer and I actually felt GUILTY telling my sibs and kids about my own breast cancer so I downplayed it. Two of my kids were getting married shortly after my diagnosis, one in six months a one in 9 months. With this being my fourth lumpectomy and dirty margins I decided on a double mast so I could forgo radiation. My cancer was ER+ which is normally slow growing so I avoided chemo as well. I stood proudly at both weddings flat as a board in a gorgeous dress but not sick from treatment.
My sister had the balls one year to say that her girlfriend had the BAD kind of breast cancer!! When I asked she said that her friend had to have chemo!! GASP!!! I said did she lose her breasts? Well, no, but she had radiation, too! My sister was a nurse in her distant past (not oncology) so I found her logic lacking. I explained that ANY breast cancer is the BAD kind!
As for the `how are you doing` stupid social bullshit question, I have ALWAYS hated it!!! I normally ignore it and move on to the real greeting. But, I am in sales and have had to learn to just say `well, and you?` knowing that it isn`t a real question being asked at all. Family and friends know not to even ask....
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Dallas, chemo does reduce only by a small percentage which is why a lot of us are wondering why it is still the first go-to choice of treatment. The oncotype test does presume that you will be on Tamoxifen for at least 5 years.
glennie, I, too, have Fibromyalgia and my father and step-mother pooh-poohed it (as did everyone else - like you say, it`s invisible) until they moved in beside neighbours they really liked and were horrified to learn that the wife had Fibro and it debilitated her like it did me. Only then did they kind of acknowledge it. Otherwise, people see us as lazy. A friend of mine got an algia-virus one year that knocked her off her feet. When the doctor told her what it was and that it was temporary, she asked if he said Fibromyalgia and he said NO!! you are lucky you don`t have that!!! She actually apologized to me over and over as she had thought for years that I was just lazy!! She is 25 years older than me with more energy and just couldn`t understand me. With her virus she got a very small picture of what I have been living with (surviving really, not living) for the past 25 years....
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Hi, Glennie and Barbie, funny I have fibromyalgia too. All of my cancers and fibro all came on just after a particularly stressful period in my life. Connection? Probably so. Is this your experience? Stephanie
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My whole LIFE has been stress!! It is the human condition. Can`t remember a time when I felt `safe`. If we had money, then I had health issues. If my health was status quo (rarely!!) then we had money issues or I was alone and struggling at a job. Right now I have all three and am wondering how much more I can take! New job, moving, financing and health, all in this one not-so-little body. Sheesh! Thank God I have my DH, though he isn`t always a rock, the other morning he did tell me to `breathe` when I started crying. First time he has responded to my stress in a comforting way....usually he shuts down.
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Fibro sisters! ((gentle hug)) I think my fibro came on after I had 3 car accidents within a 3 year time span and a particularly stressful family event. I don't think I can connect the cancer to a stress event,, but then,, it had probably been there for years. Who knows?My Mom pretty much doesn't get it. Although last year, she had a pain event,, think it was her knee or something and the pain was keeping her up at night. She actually admitted that NOW she understands what I've gone thru and doesn't know how I've been able to handle it. But that was last year,, and her pain is better,, mine isn't. and now I have the "fun" of truncal lymphedema on top of it. Wheeeeee!! The party never ends.
Robert Earl Keene, Jr. "the road goes on forever and the party never ends".
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I have truncal LE too!!!
I am presently staging our house for sale. Am working on the garage now. Killing me. Just killing me. But someone has to do it!!!
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DallasCF, What I mentioned (Adjuvant Online) is not a test but more a calculation tool for the benefit of chemo. Your doc used that (or something similar) to tell you about that 8%, I bet. The standard is that chemo is recommended when the benefit is 5% or more, being seen as enough benefit to outweigh the risks. However, once you read around the boards you will some across people who took chemo for just an additional 2-3% benefit, and some that pass on it when the benefit was slightly above 5%. Then there are the proponents of "alternative" who won't do the chemo, regardless. Ultimately, it is the individual's choice.
What Barbe mentioned, the Oncotype test, is an actual test to determine the benefit of chemo. Because you wrote HER2 +1, I thought it meant you were HER2+, but upon Googling, I see that +1 actually considered a negative result. So, since your are HER2-, maybe you should bring up the OncotypeDx with the doctor. It examines 21 gene markers and, based on that, gives you a numbered result indicating how benefical chemo would be. It also will give you a 10-year percentage risk for metastatic disease. (Disregard everything I wrote about Herceptin, because I wrote that thinking you were HER2+.)
glennie19, I am another with FM. Had it almost 10 years myself. Mine came on about a year and a half after the trauma of a parent's death. I do wonder if that is about the same time my cancer began to form. Speculating further, I now wonder if FM and cancer are both just opportunistic diseases that will move in at a time when your body's defenses are compromised. Stress definitely compromises a body, as would poor nutrition or, what I think it might have been in my case, a lack of restorative sleep.
3rdtime, Keep in mind that your ER+ cancers were in there for years prior to their detection.
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I think I should add "lack of restorative sleep" on that thread about "What do we think caused our BC?" That thread is mostly for fun,, but hey,,,, lack of restorative sleep is a HUGE problem!! I feel if I could just get that, I would FEEL SOOOO much better.
I think we have the makings of a fibro/BC support group here.
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barbe,, we are truly sisters!! Let me know if you make it to FL for the winter,,, we'll get a visit!!0 -
Speaking of brains...the coolest chemo cap ever (at least for the cooler months):
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glennie, If you are like me, you can tell the difference in your FM if you have been lucky enough to get a good night's sleep. I really feel it is at the root of our health. One of the most basic foundations.
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I love it.0 -
SLEEP is the NO 1 benefit for FM!!!!! I sleep at least 10 hours a night and must nap a lot. If I don`t get that rest I am useless. My kids get it and have for years. Once when my son was performing in another city he arranged a hotel room for me so I could rest after work before I saw his act. Gotta love èm when they get it!!!!
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yes, i can tell the difference when I get good sleep and I don't. Do any of you take sleep aids, and if so, what? I took Ambien years ago,, but I became dependent on it and had a hard time getting off of it. I don't want to do that again.
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Melatonin. Use 15-25 mgs and it`s a natural sleep aid. Doesn`t always work, but it helps.
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Dallas I worked through 6 rounds of chemo. I will say the first round and the 5th were the worst. Felt cruddy most of the time, but it was good for me to get out of the house. Everyone has to do what works for them.
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I agree, Elimar, I think when your body and mind are under stress, these things can settle in. I have been trying to deal with stress management for years, but I am a work in progress. When I told my mom I was going to have a double mastectomy and was worried about all of the discomfort, she said well don't worry, I have pain in my thumb from arthritis sometimes, you'll be fine. Now after my 3rd diagnosis, I told her I need to avoid stress, she said, you what about me? Story of our relationship. Barbie, you also have so much on your plate, I sometimes wonder how many straws we camels can handle. My DH has been pretty supportive through most, but I handled everything so well in the past, I don't think he knows what to do with the fact that I am so much more upset this time. Thinking of you Barbie, hope things turn around for you soon. Stephanie
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Glennie, Barbie and Elimar, so true, I have not slept well in years. Finally agreed to take meds in Nov. after my MIL's dementia diagnosis. I was taking 25 milligrams of Trasadone, off label for sleep. It worked great and I was getting 8 hours for the first time in years. My fibro was doing well. Then with this new diagnosis, I am not sleeping again, on the insomniac thread at 3 or 4 am LOL. I think I will ask my RO about melatonin tomorrow. It is supposed to be good for breast cancer.
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i do not sleep over 3 hours a night without meds. I have tried over the counter and they worked but left me really sleepy in the morning. I now take trazadone specifically for sleep but I take buspar, seroquel and klonopin as well for depression and anxiety and they all make me sleepy too. I have a really high tolerance for meds so it takes a lot. Ambien only worked for 2 weeks then no luck. Trazadone or ambien both work well for most people.
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I have some of those meds justamy and find that I wake up stupid. I need a clear head for my job and just can`t get used to the erratic times I take them. I wonder if I took them all the time if I would get used to them and not feel dopey or if they just wouldn`t work anymore? In Canada we have Immovane which is fabulous. It`s the OTHER blue pill and a lot of people don`t like the back-taste when you swallow it but it works great. I try to only use it when I have a big appointment the next day at work, but found the last couple of times didn`t work so I`ve gone off them for a while to let my body lose it`s resistance. Right now I am washing down a couple of ounces of Scotch and I haven`t had alcohol since my diagnosis!! Extreme times call for extreme measures....
As for Melatonin, you can get it off the shelves in Walmart, no prescription. They are tiny, tiny white 5 mg pills and you take more until you find the amount that works for you.
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i would say the "waking up stupid" is partly because you don't take them all of the time and also could be the dosage. If I take too much seroquel, it does that to me too. That is why my doc cut it back and added trazadone. I've been doing the depression/anxiety/insomnia med shuffle for about 18 years so I've been on lots of combos. I don't work so that makes it easier but klonopin or ativan are the best for the next morning. Hope you get some good sleep soon.
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For sleeping (and I really want to avoid the heavier meds,) I do use a 3 mg. melatonin. Now that I am not on Tamox., I guess I could use the diphenhydramine tabs. Generic ones are cheap. That is what is in Benadryl, but without the antihistamine.
Sleep is a topic that comes up over and over again. Lack of it is a real plague in the Mid years too. It is funny that when we read those lists of things we could change in our lifestyles to lower cancer risk, getting more and better sleep rarely gets mentioned. I have no proof, just an intuitive sense that sleep is one of the biggest foundations to our health.
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I agree! Our bodies heal while we sleep. If we don`t go deep enough, we don`t get that healing...I had a sleep study done and it proved I don`t go to the deepest level, but no one commented on that part! I read it in the report and wondered why they skipped that as not being so important???
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OK ladies - need you to jump in the pocket tomorrow - bright and early! Having a bone scan as there are a couple of areas of concern. Hoping that someone maybe has access to the Magic School Bus (remember that kid's show?) and can get a few of you in to see just what is going on. Maybe bring some lasers to zap any nasty looking spots!
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We'll be there Barsco
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Bringing the bus around!!!
(tried to find a bus but could only find this rocket ship!!)
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I'm in!
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Had MRI guided biopsy on lefty today. Righty's the reason for treatment for now. Anyway I was soooo glad I took an extra klonopin! I was fine w the anxiety. It took extra long because they messed up and had to redo part of the scan...it took almost 2 hours...ugh....anyway that's over. I will get results Wed.
Tomorrow I go get my port placed. Then I'm done till Chemo starts on the 21st. Do you guys find it strange that they are doing my chemo education on the day of my first infusion? I wonder how I am supposed to know what to do prior to the first day? Like meds not to take etc...I guess I will give them a call and find out?
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justamy I do find that strange. I had to go in a few days ahead of time. For Taxol they just ran over a few things at my last A/C infusion. Nothing like the "class" I had for A/C.
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Im going to check into it tomorrow. It is a one on one class but strange that its on the same day. I'd hate to get there and have done something that would prevent me from getting my first infusion.
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