MIDDLE-AGED WOMEN 40-60ish
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Dallas, you are certainly NOT alone! To this day it sometimes gives me goosebumps that I have breast cancer. CANCER!! That does happen to other people - not me. But I never wondered WHY me. I just felt I took one for the team, meaning that if I got it, that meant some lucky other lady didn`t. Maybe one of those ladies are even my daughters or daughter-in-law!
I, too, am impressed you have kept working. I hope you are treating yourself to something special often enough to feel you are off-setting some of the nastiness going on. I used to get a new piece of jewellery after biopsies and such, but they became so common that we stopped that!
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Welcome, DallasCF, to BCO and to this thread of your peers not only in disease but in age! You will find plenty of understanding here. It sounds like you are doing well, all things considered. The chemo has a tendency to build. If you feel just drained of energy by the end of the chemo, that is about par for the course and I hope you can take time off if needed. How big was your tumor, btw?
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ok, Dallas, you are already my hero! How the heck did you work through that?!? I guess i am a bigger baby than i think. Amazing. we are glad you finally showed up here! Sorry that you had to have more nodes dragged out, too. Are you getting neupogen or neulasta shot the day after chemo? if you are, a woman i know that went thru it, told me claritin the day of that shot, and for several days after, would really help. it really did, and they don't know why, but you could try, or run it by your onc, too. sorry you are here, but welcome, and you will meet some very inspiring strong and funny women here, and not feel so alone with it too.
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Wow, Dallas,, you kept working thru all of that??? You are amazing!Welcome to the party over here. (the club you never wanted to join) But we are a fun bunch. Ask away. Any question/problem you have,,, I'm sure you will find someone on here who has been there and has advice.
glennie
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marlegal - that sounds like fun! How does one access that and become a member of the "Tata group"?
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I almost went to Vegas with the TaTa group because I followed a bco friend to the thread and then realized it was under a Reconstruction topic! I would have been the only one there without breasts!!!
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Oh Barbe!! We need a flat sisters reunion. -
Welcome, Dallas to the club no one wants to belong to. You have been through a lot, and my thoughts are with you, you have found a great group of ladies here, who will cheer you on and give you great advice. Stephanie
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Thanks Barbe! I am grateful that my friend told me about this site. I should have reached out months ago, but I guess I was not ready. I can already tell that there are many women on this site who understand and are ready to support another "sister." It can be such a lonely journey - even with the support of family and friends. No one can really know what this is like unless you have gone through it. I guess I would ask the question if most/many women don't work during this process? Believe me, it is not easy and I hope that I will be able to continue with my schedule.
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Thank you all for the warm welcome and the nice messages! I will have more questions and will reach out when I do. One of the things that I have had a hard time getting my head around is that it will take the better part of this year before I am done with everything I need to do for surgery and treatment. Then of course the worry of whether it will come back. I try to stay positive everyday, but man, some days it is really hard. Do any of you feel that way? I have never asked the question why me either -- in fact, I've said, "why not me.? This disease does not discriminate for sure. Someone had asked how big my tumor was - I believe it was 1.8 cm.
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Hi Dallas, I worked through all of my treatments, the first time and I did fine, with only a week off for surgery and a few days off here and there. My employer was understanding and it all worked out well, It was nice to have someplace to go every day and coworkers to talk to that were supportive. That was 13 years ago though, this time I am retired, and am undergoing rads right now, the fatigue is much greater now and am glad I don't have to go to work every day now, but I do miss the support and diversion. I did not have to travel, like you do. Work as you can, and I hope your employer will give you some leeway, if you need some days off. Best of luck, Stephanie
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I still work full-time, BUT I'm not going thru chemo or rads either. I just took time off to recuperate from the surgery. Plus I work from home, doing computer order-entry. So it's pretty peaceful, and there's no traveling. I don't know how you do what you do. You have WAY more energy than I do.If you do find yourself getting tired,, you are NOT wimping out by cutting back at work. Take whatever time you need,, and that your company will allow. This is a stressful, exhausting process!
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and yes, it is hard to stay positive and not worry that it will come back. I would venture to say that the majority of us feel that way.For me, the biggest struggle has been developing lymphedema and having to deal with managing it. Health professionals don't really know lots about it, and the advice/care you get varies greatly.I really believe I have received more help from this community than from my local people. And it has been very hard to stay positive dealing with it. I have a lot of anger about developing it. More anger about it,, than my cancer.
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DallasCF, Has your oncologist ever shown you something called Adjuvant Online? It is a program where some specifics from your Dx is entered, and then it gives some percentages on how much benefit you will get from the chemo and hormonal therapies (not sure about Herceptin for HER2.) This might be something to check out. What I mean is because you are ER+, you will be getting some form of anti-hormonal drug; because you are HER2+, you will be getting Herceptin...so, how much more benefit will you get on top of that?
For all the HER2+ ladies: Mustyou always get some kind of chemo before doing the Herceptin????
I used to have more general knowledge about HER2, but I've let some of it slip away. That feels wonderful. It might be a case of chemo brain, but I actually feel more normal if I forget a cancer fact or three.
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herceptin and chemo work better together. i don't think i have ever heard of herceptin only, 'cept after chemo.
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Dallas, you do NOT have to stay positive! Others will expect that from you so that THEY feel better. We do not expect that and that is why we are all here. We need a place to say we are afraid of the future, scared of dying..where no one will say to us òh it will all be okay` like, how do THEY know!!! So let your hair down here and bitch and moan and know that we have heard it all and you don`t have to be hero here. You belong here.
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Welcome Dallas - sucks that you have to be here for sure, but as you can already see there is tremendous support, encouragement and information to be found. Lots of wonderful women to share experiences, listen when you need, help you through the tough times and help you celebrate the good times.
We have pocket parties where we all jump into your pocket whenever you are going for a scan, procedure, chemo, dr. appt or whatever so that you are never alone. All you need to do is let us know when you need us (wear something with big pockets) and we'll be there!
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One of the things that was mentioned was that people do expect you to be positive all the time -- that it is going to be ok. I remember in the first few months after diagnosis when I would be talking to a friend, family member or work associate, and they would say things like, "oh you probably won't lose your hair - not everyone loses their hair," or "I know a bunch of people who have been through breast cancer and they are all fine now." I was going through my anger stage at the time (that actually really lasted for several months which amazed me) and I wanted to go through the phone and slap them up side the head (maybe even slap them bald!). I also wanted to say, "I am going to lose my hair because that is what happens when you have breast cancer and you have to get A/C & T injected in your system!" Then after I would feel guilty and think why am I letting people make me feel guilty? I got to the point for a while where I didn't want to talk to anyone, including my husband. My family and close friends are 3 hours away so seeing them on a regular basis right now is not possible.
What I have wanted to tell everyone is simply this - why don't you care enough to go and do some research to understand exactly what I am dealing with? People do not want to really know and I am convinced of that. When they ask how are you -- they want to hear I am doing great. So just listen to how I am rambling on ladies - I am talking up a storm. This is the most I have talked about my cancer in months. Thank you, thank you, thank you. And BTW - my next Taxol treatment is Friday, August 15th at 9:00 a.m. I will go in a ball cap as I have done since losing my hair, and I will wear big pockets for sure. I will feel comfortable that no one is staring at me and wondering why I am bald. That, in itself, is such a great feeling.
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I think most people just don't want to hear the real truth. After all, if it happened to you, GASP, it could happen to them. And they surely don't want to take a walk in your shoes.
I've had fibromyalgia for 20+ years now. And I've learned with a chronic disease, especially an invisible one, most people don't really want to know how you are doing. They will ask: and my favorite answer is: do you want the truth or a good lie? Most people really want the lie although they won't say it. These days I generally respond: I'm hanging in there.
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I was a candidate for a heceptin trial I think because my Her2 was negative +1. It would have been another almost year of treatment and they could not guarantee that I would actually get the drug. Would have been put into a pool of names and randomly chosen. I chose not to participate due to my schedule, etc. I will be starting Arimidex 6 weeks after my last treatment. My Onc. did talk to me about percentages so I am wondering if he based all of that on the test you are referring to. He said if I do nothing else beside the surgery - 50% chance of recurrence or spread. Just taking the drug would be 30% and taking the drug and chemo brought it down to 22%. I thought it odd that adding the chemo would only give me an extra 8%, but those were the odds given to me. I will follow up with him this week when I have my chemo and ask about the test.
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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!! -
Speaking of brains...the coolest chemo cap ever (at least for the cooler months):
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