Which is the worse part of cancer treatment?
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I was blessed to not have to do chemo so feel I got off lightly. Surgery and rads were OK and I stopped taking AI after a few months due to SE's. I was pretty calm except for dealing with the benefits people at work. They were the worst. I totally freaked out and screamed at them down the phone when all they wanted was me to deal with paperwork just after surgery and before rads. At least I am retired now.
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Iyzzysmom, so far my insurance has worked great with no glitches. If I had problems with that, it definitely could be the worst part, so I totally get you.
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Out of everything you see in my signature, the Arimidex was the worst. But I adjusted after six months. Extreme fatigue and constant muscle cramping were the side effects. Oh and weight gain. Some hot flashes but those were not terrible.Got thru six months of weekly Taxol pretty easily and going ontwo years of H&P with almost no SEs.
Haven't had surgery (yet) lymphedema seems pretty scary. I have to research more before I go ahead with surgery.
Emotionally, just finding out I had cancer at all was shocking and devastating, even when I was told I was Stage 2 and it was curable. I was still in that fog when I found out it had already spread so being Stage IV didn't seem much worse...it's only now when I realize I'd be done with treatment by now if I had just been Stage 2, (except for taking that little pill I guess)that I realize how much simpler life would have been and that I would not have to be a patient “forever". But...I just do what's in front of me every day and I don't dwell on the awfulness too much. If I have to be a Stage IV cancer “patient"...I am a lucky one...asymptomatic, good response to treatment, side effects not terrible . I pray my luck holds out for a good long while
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I guess I had it easy since it was lumpectomy last July, rads, and Tamoxifen, all with minimal SEs. On paper, that sounds good. But I had to have a re-excision in August, then a radical robotic nephrectomy in September, then the delayed radiation before my abdomen was ready to be stretched out on that table. It was too much anesthesia and too much assault on my oldish body in a short span of time. So for me, the cumulative tiredness and soreness have been worst, and I think it delayed internal healing. I'm not particularly worried about recurrence from my low-stage, low-grade breast cancer. But the kidney, barely still Stage I, was a nasty Grade 4, so I have my own "what-if" moments, or worrying about a new primary. But my "what if" still pales in comparison to anyone who has Stage IV, or anyone who had bad chemo SEs, or long-term radiation damage. I'm sore, but lucky.
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My new found fear of the unknown. I've lost the quality I once had about not worrying about something until it happens. When I found my lump I already had an order for a mammo (my 1st at age 56) In my mind I barely feel 40. It was a an adjustment for sure, I dodged chemo thank goodness. The amount of people I see at my appointments astounds me. Just as bc.org has so many members. This adds to my fear. I try to step away at times, and carry on with my good prognosis, however I am also seeking knowledge as to never be blind sided again with having to take a crash course in cancer, or any other illness. I don't want to miss anything. Still working on the even keel---I'll get there.
Best wishes to all of you.
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For me it was healing my lumpectomy and sentinel node biopsy incisions. I unfortunately had an allergic reaction to the surgical glue, so my incisions peeled and weeped for about a month. I would have to keep nonstick gauze in my bra, and when I'd go to change it, the skin that was trying to heal would peel off with the gauze. It was awful. I had to start radiation during all of this too.
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Radiation, by far. I would have taken 16 more TCHP chemos than do radiation again. It was supposed to be the "easy part" and I failed miserably at following that instruction.
Awesome question!
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I agree that I would rather do more TCHP than do rads. It's the only part of my treatment that I now think was probably not worth the side effects.
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I had AC and it was very bad, then I had taxol and I tought it was worse than AC. Then I had my surgery and I'm thinking right now that it's even worse than chemo ... I still have to do rads and then I'll take tamoxifen. I hope to be at the lowest point right now! I am amazed by so many different experiences. It's very interesting, thanks for sharing!
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For me, it is the fear of a recurrence. All of my other tx was manageable and once done, was done. I knew what I was facing and knew that there was a time limit to whatever the tx was prescribed. I also knew that I had some control over the tx plan. Unfortunately, no one gets to control whether cancer returns. I will always be looking over my shoulder and only on my deathbed will I know if cancer eventually found me or not.
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That Neulasta jab was bad; the horrible pains all over the body following it. I can barely remember it really. The drain removal hated that too. People looking at my baldness then looking away when I caught them staring then looking again slyly. And never forgetting the horror of having cancer for always now, and life before that label and existing with numbness now. And something that I don't really understand but I do feel something like 'shame' at having this disease, Yes shame.
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wintersocks: You are not alone in feeling shame. I don't know why either but it is something that is difficult to express and to understand. There is no rationale basis for this feeling but it exists.
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This is not intended to be intrusive or rude. Two of you have mentioned shame, and I honestly cannot wrap my head around that. What could possibly be shameful about any disease, especially cancer? Is it cancer in general that causes shame? Or just breast cancer? I'm sorry, but I have to ask to keep my head from exploding. I truly hate whoever or whatever caused either of you to think "shame" and "breast cancer" should live in the same universe.
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I agree with Alice - I hate that you ladies feel shame for something that was not your fault. Something that you are doing everything possible to treat. I think that people who don't have breast cancer can be unintentionally unkind because they are afraid of it happening to them. I hope you can both learn to hold up your heads and be proud of your dignity, beauty and courage.
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I confess that I have felt and feel shame, not because of the disease but because of my physical changes. I also felt very shamed when I complained in some thread and was consoled by someone in stage V. Guilty and shamed
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yndorian,
Please don’t feel guilty complaining things in front of this stage IV women (sadly, no stage V) . Here’s what a wise person told me, “ The worst you know, is the worst you know.” Think about it, our experiences will all be different, that doesn’t mean we don’t have the right to complain just because someone has it worse. Clearly we do have to be sensitive to those faced with severe illness or in the process of end of life decisions, but I understand that I can only live my experience and would never expect someone else to hide the fact that they’re feeling bad just because they’re a lower stage than I am. Now if you really want to hear complaints, ask about my brutal chest tube insertion in the ER... As for ones physical changes, I am not thrilled about them, but I’m probably much older than you so I’ll chalk it up to aging 😅
It does take time to get used to physical changes, but you will. And never forget that you are much more than your body.
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I think some people can feel shame just at being very noticeable to others... (like being bald). Or maybe shame may come from not being able to do their normal stuff (feeling helpless, not contributing).
But I agree shame is a very unfair burden, especially on top of cancer.
I hope anyone feeling shame will remind themselves that facing bad circumstances with grace and intelligence is something to be PROUD of.
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I felt a little weird about my lopsidedness at first last year. Self-consciousness, maybe. But once I got out of winter's sweatshirt disguise, I decided the hell with it. I am wearing my soft stretchy bras that let my unmatched boobs hang where they want, and if anyone stares, I will be glaring right back at them. I may have gone too far the day I held up a chayote squash to my chest in a grocery store and rather loudly told my hubby "Look! It matches!" 😀
Please do not EVER feel ashamed or guilty or anything negative about your awesome bodies. Our missing, shortened, or reconstructed breasts are our badges of honor and courage.
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AliceBastable
As I said I don't really understand the shame either, but never the less it is still something I felt and I still feel.
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exbrnxgrl your words are incredibly kind.
I struggle not so much with shame but with shoot I don't even know the word but I do it all the time. Whatever I'm going through, I downplay it, minimize it, discount it. Which leaves no room for processing what's going on or getting through it. Met with the psych yesterday through the care team and she pointed that out. I cried, because she's right.
So thank you.
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Wow, shame. May I suggest that you try therapy for that. There is nothing that you did to cause this disease, nothing to be ashamed of. Of all the emotions that I have felt about this disease, shame is not one of them
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wintersocks: Ditto. For those of you who have not experienced this, you are lucky.
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edj3 - glad you cried. Sorry that was not meant to be harsh but my nana always said its good to cry cause it washes away the clouds in your eyes so you can see whats troubling you. My best friend in university had breast cancer. The day I met her she was sitting alone at a table in cafeteria there were no other seats so I asked her if I could sit down. She looked at me and said I have cancer - I said is it contagious she said no - I said ok we're good I sat down and she became my best of best friends. She was one of the bravest, kindest most beautiful woman I have ever known. From your posts and your willingness to comfort others I'd say you are right up there with the brave kind and beautiful. So ladies be kind to yourselves, its ok to be a little bit broken. Children's most loved toys are usually the ones with scars. They don't see the scars they just know that those stuffies were the ones that comforted them in the night. Hugs to all
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Physically, radiation was the worst. I have had 4 surgeries and had four rounds of chemo but radiation was more debilitating. I worked full time through all of it and my main memory is each day I was more uncomfortable than the day before for my 7 weeks of daily radiation and the week after. I remember noticing “today it hurts less than yesterday “ one week after my last radiation treatment. And then I tripped and broke my elbow on that side! Haha.
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Sorry runrcrb that you broke your elbow but part of me wants to laugh a little - talk about dark humour. Hope you feel better soon from both rads and your elbow
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So far for me, chemo. Part of that was knowing that each chemo session was going to be harder than the last one, but easier than what was to come. Surgery, while certainly painful, was psychologically different. I awoke in a lot of pain, but my first thought was "this is as bad as it's going to get and every hour after this on will be easier than the last". It was really helpful, mentally, to know it was going to get better, not worse.
I literally just started radiation yesterday, so have no track record yet. Logistically, it's better than chemo. The treatment center is 5 minutes from my office and I can be back at my desk in 45 minutes. It feels like I'm ducking out to run a quick errand and then it's back to my routine. Of course, I don't have any SEs yet, so all that may change!
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I've been very lucky with radiation so far. I barely have a tan. One more to go. So we'll see. And we'll also see how I do on Tamoxifen, which I'll start in a couple of weeks, so still early days sort of.
For me, honest to God, the most painful thing was the stupid tatoos for the radiation. Maybe they didn't know what they were doing. Maybe I'm just too sensitive. But that hurt more than the surgery recovery, which barely hurt at all and I only took Tylenol for like two days. The SNB site was painless. Removing the drains (which I only had for 48 hours) was painless. I acknowledge how lucky I am on that score.
Not part of the treatment, but also, the waiting. OMG the waiting. Then the confusion. "WTF does THAT even mean?" I had wonderful doctors who explained everything and I spent a lot of time here and reading books to get self educated. But that early stage, when you don't know what is going on and then you also don't understand what anything means when they do tell you what's going on, is the absolute pits.Good luck to you and all of us OP.
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giddyupgirl - that’s why I tell the story. I cried the morning after when I couldn’t pull on my pants but otherwise, it was funny. What else can you do but laugh?
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edj3,
💕 take good care of yourself
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mom2bunky - yeah those 5 little dots cured me of any desire to get a "real" tattoo. It didn't hurt all that much for me, but it just seemed like yet another indignity I had to suffer! I'm honestly thinking of getting them removed once I'm done with them. If the cancer comes back (god forbid) they will need new tattoos anyway.
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