IM DONE WITH MY TREATMENT - NOW WHAT? INFO...
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Thank you so much for sharing this valuable information!
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Isn't it funny that although tests for mets don't help survival but we all want to know when we go to mets. Obviously the person who wrote the article doesn't have cancer.
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Thanks for sharing this...I was diagnosed 12/31/03 and finished Arimidex lask week. Perfectly explains why we "just don't move on"...
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Thanks for the info! I finished my last treatment on Sept.4th, and had my port removed Sept. 11th. But sometimes it seems like trying to pick up the pieces is the hardest part.
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Thanks so much for posting this info.
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Thanks for the information. I just read it tonight and it made me feel better.
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Thank you.....we may NOT be as abnormal as we may think................Artsee
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I'm just over 1 year out - had my firs mammogram & MRI. The MRI was so awful when I had it right after my lumpectomy. This time was much more comfortable - even seemed short! I don't find myself worrying as much as some folks seem to. The anti-depressants definately help.
Today I was lookign back through some old emails and came to ones from the period during my radiation treatment. There was some major stuff going on at work then, on top of my treatment (I'm the boss) and it just really pissed me off to see that there was at least 1 person at work who was acting out then, rather than giving me a break. It was such a hard time.
All in all, though, I would say I usually feel like that year is behind me. I'm convinced that it will not come back. Usually.
One question - I have a hard time touching the breast that had the cancer. It's so wierd to have a "hole" there where they took it out. And it is hard as a rock - I guess scarring or fluid. I know that I should be touching it (I found the original cancer just by happenstance), but I just don't. Does anyone else feel like that?
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Hi Dansmom,
I'm in NC too, just west of Asheville, in the mountains. Did you all get snow on Monday?
My first mammo after my ordeal was so very painful that I lodged a complaint against the breast center, whose administrator personally issued me an apology, and I think I got the tech in trouble, so I'm really dreading my next one, due in April
I've never had an MRI. Glad your most recent one was much less painful. And Ativan is my best friend.I too have a hard time with my affected (right) breast. It hurts 95 percent of the time, although my onc/surgeon assured me it was just a seroma or scar tissue. Some days it is hard, but most days it just feels like it's going to explode. It has always been a bit larger than the left one until after my surgery... now it's larger again! I just try to ignore it most of the time, but I do plan to mention it at my appt. next month.
I worked all thru my treatments and in retrospect now, I wish I'd taken some time off to take better care of myself. If I had taken off and walked and exercised more instead of sitting at this dang computer all day, I probably could have warded off the 20+ excess lbs I gained. So, if I could offer any advice to bc newbies, it would be to take time off if you can and take care of yourself-- the job will be there when you heal!
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Thank you very much for this info!!!!!
I really need this.
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Thank you newvikcie for the infos and all the others for their comments,
I am just finishing my chemo, heading for xrays next month. Even though I am quite relieved, I have to say I do have mixed emotions. I have tolerated my treatment very vell (4 AC and 5 Taxols and the 6th to go in 2 weeks) and been very stable on the emotional side, so this is new to me having those strange feelings coming creeping up on me.
Thanks again. lol
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Bump and thanks!
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I just sent this to a friend of mine, with some hope. He's a nutty guy, a great friend and also a total pain. He's the one who picked me up from the hospital after my lumpectomy, like i said, a great friend. A couple days after RADS ended he called me every 45 minutes in the morning when I happened to be sleeping... the really wonderful "sleeping in" sleep I really needed... while the nanny was watching my son. It was a perfect morning for sleeping until he called. And called. And called. I have a problem with the phones in my house, long story short, I can't turn off the ringer. I fell back asleep after the first call, and even the second... I tried pulling the power cord from the phone by my bed so I was really surprised by the third call ringer ringing... from a phone elsewhere in my bedroom. To this day - a week later- I haven't figured out how to get my phone ringers back the way they were. On the third call I answered and my voice came out really raspy, I said "Stop. Stop. I will call you later."
He's done this before over the years, can't seem to control himself. I managed to get him to stop late night calls last winter for the baby. (I am a single mom). I said only call my cell after 9pm, and that worked. So I tried adding a second rule and politely asking him to only call once on my home phone during the day, I will surely see it and call him back ASAP. His response was to say I shouldn't call him more than once after 11pm. I had called him twice, the night before, because that's his usual phone calling time, and he is often out or in the shower at that time. I wrote back that although there's no tit for tat, as I had radiation fatigue and a 1 year old, he can feel safe knowing I wont call him after 11pm. So he stopped speaking to me altogether. Not even a Happy Birthday wish 2 days later on my birthday. No response to nice emails.
So I sent that to him and asked him to check otu the section on Fatigue. I don't need the stress.
While I am venting... I go back to the Cancer Center now to visit with a gal I met during treatment. She's still going, and doing a clinical trial that puts her in chemo at the same time as RADS. Its a heckova experience. Seeing how they treat people who are patients like prisoners, jerking her around about appointments and the exact same problem i had with dressings and pain these "caregivers" just don't improve with the simple basic stuff! I felt like I was a foot taller, they all seemed smaller to me.
I stopped into the Social Workers office with my friend and her kids one day, they were there for an appointment, and frankly I think this Social Worker is a waste of time, and the SW hands me a pamphlet about Living with Cancer. This was bizarre because I was already in the mindset of it being basically over for me. Stage I, escaped chemo because of OncotypeDX, gonna start Tamoxifen and Zometa for 5 years but so far my ONC, my radiologist, my BS, Gyno all telling me I don't have to do anything more (yes they will be checking stuff more carefully, but for my schedule, I don't see anything I have to do, in fact I was signing up for more tests and exams and doctors and stuff, and they all also said fugetaboutit) and the great majority of women on Tamox and Zometa have no SEs except the hot flashes- and I am 49 so I am going that way anyway. SW said "Oh, I forgot" or something to that effect. It shook me a little. Why is it always the other patients who are supportive and upbeat, while the medical professionals keep sweeping the same spot?
Well at least I shook their trees a bit, they are all freaked out when they see me back again. I think when I arrive the first time fully clothed, they act human, then I put the gown on and they begin to belittle me in every way, until I feel like Oliver " please sir, may i have some more?... LIFE????" Now that I am done treatment with them, they expect me to disappear. Well I have my clothes on again, I live 20 blocks away and i have friends here, so how about you try going back to treating me like a human again? Hmmmm?
One more note... there is one RADS tech who seemed more human than the others- although they were all cordial and nice... then she confided in me that she's got lumpy breasts and several areas they are watching. She figures she's going to be one of "us". It's a weird world.
OK I lied, one more thing bothering me... when I went to visit my friend getting chemo, she said she was in cubicle 8. I called her name outside the curtain and she didnt answer, I didn't know what to do so I drew back the curtain and there was- not her. She was actually in cubicle 9, just confused, and we all know how that is. But I felt like such a huge jerk to the gal in cubicle 8. I apologized but I would just as happily have stayed to visit her if she'd like, there was no one with her and my friend already had company. I just didn't know which would be better or more annoying for cubicle 8. If I came in and offered her company, would she be ticked that I interrupted her privacy and just assumed she needed company? Did I make her feel more alone by just leaving her with an apology?
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forgot to add to my favorites, posting is the only way I know to do it... oops!
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bump
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I like this thread, I was lost after tx and this helped.
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So very happy that this is still helping people! Hugs all!
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Bump
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Happy Thoughts
Lord, remind me that the past is just that.
Protect me from my own thoughts.
Take away the old tapes playing in my head.
Fill my mind with thoughts of peace and serenity.
Lead me into the light, away from darkness.
Surround me with Your love.
God, remind me that yesterday is gone;
Tomorrow may never be;
Today is all I have.Bill P. and Lisa D., from The 12 Step Prayer Book, Volume 2 --
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bump
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bump- and very interesting to read 8 months later...
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Today is the one year anniversary of my bi-mast and I am feeling sort of odd. I went to the climbing gym and climbed tonight after work. One of my partners asked about my health, as she normally does, and I told her that it had been one year since my mast. He response was to tell me that it is wonderful. I know she meant it is wonderful that I am reasonably healthy and done with treatment (even though as it turned out my treatment was primarily surgical). But I don't think it is wonderful - I miss my breasts . I have a lot of scar tissue, so my chest usally feels tight and uncomfortable, even my range of motion is normal. I have mild le, which is under control, but having to wear a sleeve and take precautions is a constant reminder of bc. To complicate matters, I had a hip replacement just before my initial bc diagnosis. In fact, my surgeon's after my first consulation with him stated that I walked with a noticable limp. My recovery from the hip replacement has gone well, but I had to work at it.
I read stuff that talks about 'new normal' and it irks me. I don't like the way living in my body feels these days and I don't want it to feel normal to me. I told my friend that I really want my old body back, I want a do over.0 -
What is "normal". Living in fear of recurrence is not normal.
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Well living in fear of recurrence is very typical and hence unfortunately normal for us.
I understand wanting your old body back. I would take mine back in a heartbeat, plus my old sense of feeling healthy. Unfortunately that will never happen. I think what people mean by the new normal is coming to a place where you accept who you have become and move on. It is hard to ever forget you have a different body because we are bombarded with pictures of cleavage and dresses which I could not wear anymore. It is hard to forget when I go to the gym and take my bra off in the shower.
I do try to be grateful that so far so good, today I am cancer free.
Joanne
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I remember reading this back during RADs and thinking it was so helpful and positive, but looking at it now bothers me more. The part about how 80% of all recurrences are found by the patients, not at the check ups, that's annoying because everyone I know is trying NOT to think everything is cancer. So what, now we're supposed to check every little thing ourselves and keep bringing it to the docs? And not at all pleased about the part about them not being able to scan for mets any sooner than we'd discover it ourselves, and discovering it not really meaning it does any good to find it "early". So that's depressing.
On the "new normal" I no more want a "new normal" for my health than I did for life after 9/11.
But... it beats the alternatives. I love my life, and I am gonna do my best to keep it, gonna do my best to return to my health (and yes, it's easier for me, and I appreciate that every second).
Lisa-e I hope you looked into getting a second opinion, going to another hospital to get care from here on. From your story and your stats it sounds like you got a raw deal- although you kicked the sh*t out of BC. Many many hugs.
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Hi Ladies
I am Susie and live in New Zealand. I finished ally my treatment on friday the 25th September. Had a lump, chemo & radio. Soooo glad it is over but would like to keep chatting to people whom have gone thru this. I am going to counselling next week as my friends say I have changed and am in danger of loosing the sweet side of my nature, It is just that I won't tolerate fools anymore!!
I look forward to chatting to you. Susie
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Hiya Susie! I completely understand what you mean when you say you won't tolerate fools any more. No chance you will lose your sweet nature
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Rachel, I am actually pretty happy with my care here. Going to another hospital would involve driving about 40 miles one way. The only thing I would have done differently was have an MRI before my initial surgery as the only thing that showed up on my screening mammogram was one area of DCIS. I talked with my oncologist about a mri and he recomended against it, due to the number of false positives. I willingly took his advise. My surgeon felt a dimple that one invasive tumor was causing - the other one was found after I had a MRI at the request of my rad onc. I've had issues with my oncologist, mainly that I think my initial dx was not exciting enough to get his full attention. On the other hand, I do have his full attention now and I can commuicate with him. He admits that he was wrong about the mri, from a retrospective point of view, but still dislikes them because of the rate of false positives.
The only thing I think is a raw deal is that I had the misfortune to have had large, dense breast s that were 'not suitable to mammography' - from a old report. I also seem to tendency to form adhesions and I can't blame my surgeon for that.
One thing I have learned from the past year is that no physician or medical provider is perfect; given that I want to see some one who I can talk with and who is close by. The less time I spend on doctor's appointments the better as far as I am concerned. Even though I am done with active treatment, it feels like I spend a lot of time on 'maintenance' which is something I didn't do pre bc. That makes harder to move on.
Joanne, I do accept my current body - I miss the heck out of my old body, but missing it doesn't stop me from living my life.
Susie, sweet is over rated, imo.0 -
Hi, My treatments for IDC included left mastectomy, chemo, radiation and took 9 months. Treatment was very difficult at times, as I'm sure you all know from personal experience. I am still dealing with some painful and fortunately, unrelated, back and neck problems, but am NED as far as the cancer goes! I do have mild lymphedema and mild capsular contracture, a very uneven and badly scarred chest, but being NED makes all of that easier to accept. My problem now is being able to find something to propel myself forward. I've fallen back into the same basic life I was living before BC, and it's mostly fine but when I think about making some changes that I think would improve my life, I get very panicky. Anyone else having the same issues?
-bonnie
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BUMP!!
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