Why was I stronger DURING treatment than I am now?
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Smartass, congrats on finishing Herceptin! Chemo has really been a long haul for you. I'm afraid I haven't gotten to the point where I don't think about cancer every day. I did when I had ovarian cander and with the lymphoma that I have, but the situations with those are really different. The ovarian cancer was very early stage and cured with surgery. The lymphoma is indolent and could hang around doing nothing for years or even forever. I'm not sure I'm hoping that once I complete reconstruction and get completely healed, the tightness across my chest which constantly reminds me of cancer will go away. Maybe then, if the cosmetic results are good enough, I won't think about it every day. Happy birthday, and I hope your liver decides to behave itself.
BosumBlues, I agree that you should talk to your MO about that pain. I hope it turns out to be nothing.
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thanks all for the support re selling my house. Signed contract with realtor yesterday to sell house on or before June 1. Major issue now is to cut back on sweets (comfort eating) and getting back to exercise. Seeing all these contractors really got me off schedule.
Over 2 years out and I still think of BC everyday. That's not a bad thing for me. I am triple negative and all I have to prevent recurrence is diet and exercise. That's why I'm concerned about stress eating etc. thinking of BC every day (during more "normal times Helps me keep those priorities in place!
I was on an antidepressant before BC and will likely be on one or another for rest of my life. I have PTSD with major depression. The latter runs in my family.
I've heard of the Sancuso patch for nausea on another thread lately. If I ever have to have chemo again I will be happy to have something new to try for nausea since meds in first chemo never really controlled my nausea. That was the worst part!
Hugs to all,
Peggy
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Peggy - congrats on signing the contract with the realtor - hopefully they can get it done quickly for you! My oldest is graduating from UNC Wilmington in May and would like to stay there. We may end up there in a few years. My youngest graduates HS next year, so we don't want to move until sometime after that. Good luck also with the diet and exercise regimen. I have a lot of trouble with knee-jerk stress eating! I keep trying to get exercising, but, so far, that has been hit or miss. At least I should be walking a lot tomorrow on a college tour!
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2 Tabbies, can I ask you what dosage of Effexor helps? I am on the lowest dose and it helped with Tamoxifen but not so much now with the ovaries out. But its only been 2 weeks so it could be side effects still of the pain meds. I had a reaction from Morphine- then fentanyl and the Oxy made me so loopy. Kids laugh at my stories and I have to laugh too.. OMG the stuff I do.. I am not on them anymore but seems to still have some side effects.
How long did your incision take to heal. Since I was also allergic to staples- Ya I am a mess- they sewed my incision ( inside out) with dissolvable stitches, Its been two weeks and some clear drainage still. I am still off work - but boss wanted me to drive Monday 75 miles one way for an all day staff meeting and drive back. UMMM- I haven't been released to drive back- I go see both my surgeons on March 25th. Bosses- UFFFFF!!!!
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ndgrrl, I'm on 150 mg of Effexor. I also take 300 mg of Gabapentin a day. My MO prescribed that for the awful mood swings I had when I started on Tamoxifen, but it also reduced the hot flashes some. (Yes, I'm taking meds for the side effects of my other meds! Talk about being a mess.) The hot flashes are down to a reasonable level, but I'm dreading summer. I don't recall exactly how long it took my abdominal incision to heal since it was back in 2003/2003. (Long story, but I ended up having 2 surgeries.) At 2 weeks out, you should be getting there. Your boss is obviously clueless. You've just had MAJOR abdominal surgery. You should be off for 6-8 weeks for crying out loud and definitely not driving yet.
Peggy, I understand the emotional eating. When I'm depressed, I head for the comfort food. I put on 20 lbs during cancer treatment, and I'm trying to lose it. I hope it will help with the lymphedema in my leg and also bring my blood pressure down some. That went up following cancer treatment also. Good luck with the house sale!
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Congrats on the contract for the house sale Peggy. That must be a relief to have it coming to an end.
Bosom, unfortunately I do think you have to get that sternum pain checked.
2tabbies - what is the gabapentin supposed to help with? The mood swings or hot flashes? Curious, as I take 3000 mg of gabapentin a day for kidney pain. It would be nice if is has other benefits...although, not going to lie, if it helps with mood and hot flashes...I cannot imagine what she sweaty bi*ch I would be without it. Perhaps it is the combination with Effexxor. I am on Zoloft for anxiety/depression.
I am still feeling angry & bitter today. I need to snap out of this somehow, but not sure how. I am happy to be done with infusions & ready to have my surgery. I need some time away from the world again to decompress.
Professionally, I advocate for people, and right now I am not as good at it as I used to be because I sort of don't care & my short temper makes me less flexible. I feel like people need something from me I do not want to give anymore. I want to look for a new job to make more money & have less personal investment. It scares the crap out of me though, as my husband is laid off & hasn't found anything. I also need to be able to take FMLA if something goes wrong...so I feel stuck & perhaps that is the root of my bitterness.
I applied for a new job a while back with our national organization. Politics being what they are, after 4 months, I found out I did not get the job. I was actually ok with that, as I found out our national organization is worse than where I am now. I want no part in working for those people. I think while I am on leave for my surgery I will dust off my resume again & start applying for positions....maybe I will find something that makes me want to jump ship with my floaty new boobs. (Supposed to be funny)
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ndgrrl - Drive 75 miles for a meeting. Is your boss a masochist? One thing I learned through this whole ordeal is that I am the boss of me, and I need to do what's right for my body. It was a hard lesson to learn, 'cus I wasn't very good at setting boundaries or asking for what I need. But I'm getting better at it - in fact, I'm pretty good at saying 'no'.
2Tabbies - I'm dreading summer too, and for the same reason. My hot flashes are wildly uncomfortable. I just got back from Miami where it was very hot, to an absolutely fabulous brisk Canadian winter day. I've never been so happy to put on my hat and boots and take the dog for a walk.
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Smartass, the gabapentin is for both the mood swings and hot flashes. Interesting that you take it for kidney pain. Is the pain neurologic in origin? Gabapentin seems to be used for lots of neurological issues. I used to take Zoloft, but it doesn't play nicely with Tamoxifen so I can't take it now. Also, Effexor is supposed to be more helpful for hot flashes as well as treating depression. A lot of the other antidepressants can't be taken with Tamoxifen. Good luck with your job search. I'm a bit angry about feeling stuck in my job as well.
Janet, there are times when a hot flash hits that I go outside without a jacket. Our winters aren't as cold as yours, but it's cool enough to put out the fire for a while.
BosumBlues, glad to hear you've got a good new MO. Having to find all new doctors sucks.
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ndgrrl - how insane of your boss to suggest you drive that far and back for a meeting so close after surgery!!! Argh!! Take care of yourself and don't let the boss talk you into doing anything that could set you back physically.
Smart - good idea to dust off your resume and start sending out some new ones! Best of luck with the job hunt! My job is only part-time, but I feel rather stuck as well. I feel lucky to have some flexibility with my hours, but there are a number of things there that drive me crazy and it's not a good time to switch - I am trying to hold off until my daughter graduates HS. I feel like I'm going to have a hard time when I do try to switch because I worked from home for many years and have only been back in the out of the home job market for 3 1/2 years. I'd love to get another job working from home, but am not sure how to even go about looking for one.
BosomB - good luck with the new MO! I hope she is a great fit and answers all your questions for you. Glad you are getting the sternum pain checked out, too.
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2Tabbies, I take the gabapentin because I have hydronephrosis...fancy word for swollen kidney. My ureters are too narrow & my kidneys function great, but do not drain like they should. The left one is petty painful, so I have been on gabapentin for about 5 years.
BosumBlues, I cannot imagine how stressful switching docs would be once, let alone more. you are a trooper. I admire that you do not immediately jump on the panic button, sometimes I find myself there with both feet before I can even absorb the scary new information. Good for you.
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Smart, your kidney condition sounds really painful. There are so many things that can go wrong with bodies, that sometimes I wonder how any of us can be healthy. I'm worried about my mother at the moment. A GI infection has cascaded into atrial fibrillation then congestive heart failure. True to her nature (grumpy but never a quitter), she sounded ok when I talked to her today.
Bosum, good luck with the therapy. It sounds stressful. I could probably use more therapy than I've had. I was thinking of finding a therapist with experience with cancer patients.
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Hi Ladies,
Today is my 4 year cancerversary - 4 years out from dx. Remission is good, so look forward to it if your not there now.
Question: Do any of you know if the 5 year date that is so often touted is the date from diagnosis, or the date from end of treatment? I can't find any definition anywhere for this. We need a glossary of terms on this site.
Hugs to you all....
Katarina
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congratulations on 4 years!!!!! Five years seems to be less significant for us lobular people as I understand its the date from diagnosis, however it is more common for lobular cancer to return after 5 to 10 years than in those with other kinds of cancer...........sorry to say this
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Good queston Katarina--- My Mo counts from date of surgery I think. I know my surgeon counts that date, my Rad ONC however was the first one to tell me I was cancer free, and that was when I completed my Radiation... I just know the date of diagnosis is the one burned in my brain.....0 -
My surgeon told me to count from the date of surgery. I wanted it to be date of dx, but I resisted that. either date is etched on my mind too
Hello Lilly, how are you doing?
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I would have thought it was date of diagnosis as well. But I guess surgery makes sense, since that marks the date of of being free of the cancer. I have the dates etched in my mind as well, but somehow, by the time it rolls around, I manage to completely overlook it. But when the time five years rolls around, I'm going to do something fabulous!
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My MO told me that there's always a chance of recurrence with hormone positive bc. So the 5 year milestone is somewhat meaningless for me. The risk does go down with time though. So I guess we should celebrate every day we wake up healthy. That said, I'll admit to having a hard time feeling like I'll never really have this monkey off my back.
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Hi Winter, I am up and down, struggling with a debilitating virus that will not go away and had an accident so have injuries from that, on painkillers and generally feeling bit beaten up!!! How are you? I am almost ready for visitors if you want some chillout time ?
Sorry to be a downer but my understanding is that our risk does not go down over time if its ILC.....at least not until well over 10 years has passed.............
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Lily, 2 Tabbies & BB,
I have read on the Lobular thread, that the risk of reoccurrence does go down for ductal & Lobular cancer after 5 years, but lobular is not as significant. Also, because of its sneaky behavior, & hard to find, it can go undetected. My MO has never made any reference to my Lobular Cancer. When I have brought it up, she waves her hand. My Breast surgeon never quit talking about the characteristics of lobular & how it was a law suit waiting to happen.
2 Tabbies, we were dx days apart...
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This is all interesting. My MO didn't differentiate between ductal and lobular as far as survival rate changing over time. He only talked about hormone positive vs hormone negative in that regard. He said that hormone positive bc is less likely to recur within 5 years than hormone negative, but the risk never completely goes away. Hormone negative is more likely to recur within 5 years, but if you make it that far, the risk really drops. That was his take on it anyway.
Holeinone, we did indeed start this "adventure" right about the same time. Are we done yet?
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I wish, Arimidex for another 4-9 years. I will get my 3rd Zometa infusion in April.
Are you getting a Bisphosphonate
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Now they're talking about Arrimidex for 9 years? I was afraid that would happen. I asked my dr several times and
he insisted it was just 5 years. I suppose if it keeps the monster at bay it's worth it but the pains are pretty brutal.
h
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katarina -congrats on the 4 year mark! All milestones NED are worth celebrating. I was a little unsure of which date is the cancerversary too, and heard the same response...surgery date because that is when the cancer is out. I am not sure what that means for folks who have chemo first.
Bosom, I am proud of you for delving into the core issues. My bravery hasn't led me that far yet....I am afraid to take the lid off that mess of snakes. I wish I was ready to deal with how I got where I am, but I am too afraid of messing around with that which I have pushed down for decades.
2Tabbies - the kidney is painful, but I am not a candidate for less invasive procedures to fix it a second time, so I am just going to power through that one. Sorry your mom is not well. I hope she improves every day. Our bodies are pretty amazing things, but when things stop working right, it sucks. Like a bad engine.
Speaking of remission. I am not sure why, but I cannot use that word for myself. I use No Evidence of Disease. I feel like if I say remission, the other shoe will drop & I will have to say no longer in remission. It is a stupid nuance....but I can only say NED about myself.
Less than two weeks til surgery. I am pretty excited to jump this next hurdle. I h
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Smartass, I'm the exact same way. Cancer being cancer, I can't say I'm "cured" and no one has used the word
remission. I like NED. I think that's accurate but even that makes me nervous. I feel like the next minute there will be evidence! And I'm always full of aches and pains and who knows if that isn't evidence?
Hmmm, I have to find something to say that I'm comfortable with. I have a friend who keeps saying "you have cancer" and that bothers me too. What a strange disease this is! Absolutely NO certainty.
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I like 'no evidence of disease' as well. I don't mind the other terminology, but NED seems like a good fit for me too.
The one word I have never been able to use is 'journey'. I vowed never to use it - maybe because it's so over used. I always considered the treatment to be a process, and then I also borrowed someone else's phrase, and now think of at as a 'Rodeo'.
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Maybe you should let up a bit on the therapy? I can't see how getting overwhelmed can be helpful.
But I don't know what you need. I'd say trust your gut.
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Bosom Blues, can you get yourself a punchbag like boxers use? and a ball to kick against the wall? and some stress balls you can squeeze the life out of? Doing something physical really helps with anger that has been held in too long.. ......or punch imaginary people in Zumba.......or draw them adn then stab them with sharp pencils........you can see I have been there can´t you?!!!
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Holeinone, I am not on a bisphosphonate. I think that might be because I'm on Tamoxifen rather than any of the AI's at the moment. My understanding is that Tamoxifen is actually good for your bones or at least not harmful. I'll be on it for another year or two then switch to an AI for 7 or 8 years. Joy.
Regarding the preferred terminology for our status, I don't feel I can use cured, remission or even NED. In my case at least, nobody is doing any scans or anything to actually look for disease so how can I say there's not evidence of it? There's no evidence that I can feel, but it doesn't mean it's not there. I can say, I'm free of cancer at the moment as far as I know. That's about it.
Janet, I absolutely hate using the word "journey" in reference to having cancer. This is not a fun trip of some sort. As you said, it's also been way over used. Rodeo is interesting. I do feel like I've been lassoed sometimes. I even feel like I got branded by radiation and surgery to continue the cattle related metaphor.
BosumBlues, I feel for you. That's just the way I was after my I went into surgically induced menopause before I got an estrogen patch. Anything could set me off. To some extent, it happened again when I started Tamoxifen. Gabapentin has helped.
Smart, thanks for the kind words on my mother. You're right that when things go wrong with our bodies, it really sucks. I'm afraid at her age there's no hope of really getting things fixed to the point where she's comfortable. She's really ready to be done with this life, and I can't blame her. That said, she's improved enough to transfer from the hospital to rehab.
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Timbuktu- I guess we understand there is no "cure," but I feel like the general public thinks cure. NED makes me feel better because while I also worry that they will find evidence.
Sorry Janet, I am guilty of the using the word journey. I think because I don't have a better word for it...ideas?
Bosum, I am still proud of you for trying. That takes more courage than I have.
On a rant about remission, cure, NED....I find I am pretty hot headed about other non-cancer experts trying to tell me about my cancer. My idiot brother in law posted on Facebook....if only his sister in law (me) would have had a mammogram, she would not have had to go through the awful experience of breast cancer. Then goes on to say he is glad I am cured.
I want to choke him most of the time, but this made me want to commit even worse mayhem against his person. If he knew a damn thing about what has been happening this past year he would know I had mammos before the one that led to my diagnosis, and that mammos don't CURE breast cancer!😤😤😤 I thought my head might explode when I read it.
By some sort of grace, I managed to keep my angry fingers off my keyboard.
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I bet that took tremendous self control. Bravo. Rant on here all you like, he is really an idiot.
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