Which is the worse part of cancer treatment?
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It's become less on my mind once I got far out enough from txs. You have to live life. Anything can hit tomorrow.
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you know what, the whole experience was just out of this world. I was diagnosed with a benign brain tumour in 2009 for which I had an 8 hour surgery, lost my hearing on one side i spent a year recovering from. Then 6 years later I am diagnosed with invasive breast cancer. I have a really goodprognosis but with this history what's next is always on my mind.
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... feeling pressured to do radiation without the time and mental space to consider it fully and do research... have lasting damage to my skin that most likely will remain that way
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This is a very interesting thread and thanks, Yndorian, for posing the question. I read back through all the responses and it really makes it clear how varied our experiences are.
For me, the most painful parts were the initial stereotactic core biopsy (which hurt like the devil and seemed to take forever), and the nuclear medicine injections into my breast for the SNB. Other things also hurt (like the drain tubes being removed or my port being accessed) but were fast enough to be tolerable. In a more long-term way, the tissue expanders were insanely uncomfortable. I was thoroughly terrified at the idea of having a BMX, but I got through it. And I was more terrified still of chemo, but I got through that, too. I'm grateful to a really kind team of providers. I absolutely hated losing my hair, too, but it grew back.
It saddens me to know some of us experience shame. Even with my reconstructed breasts and multiple scars. I don't feel shame. Sorrow, yes, but not shame. And I wore a scarf over my head - no wig - when I was fully bald, but as soon as I had a hint of hair I went out publicly without being covered. I didn't feel ashamed. If anything, I felt proud of myself for making very difficult, painful choices to up the odds that I'd be here for my kids. The feedback that I got was that it made me look badass. And aren't we all badass for whichever treatments we get through?
So now that I'm past active treatment and just taking Tamoxifen, the worst for me is the fear and uncertainty about what's ahead. Every bone ache or twinge scares me and I no longer have confidence that I have old age ahead of me or even retirement. That sucks. I try to stay focused on living NOW.
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Thanks for this thread Yndorian1. I read through all of your responses with interest. RADS was terrible (mentally) for me, I tried Arimidex twice and quit after a week each time, I'm still struggling with scar tissue that is extremely painful and feels like a tumor (but CBD oil is helping with the pain and helping me sleep at night since my doctors continue to dismiss me).
I think the hardest and worst part is similar to what MountainMia said. I have completely isolated myself from pretty much everyone because I quickly realized nobody really wanted to hear the truth when they asked how I was doing. Or they wanted me to start eating lemons (because clearly that cures stage 3C cancer), or they just HAD to tell me about their 3rd cousin's hairdresser who was diagnosed in their 30s and was gone within 6 weeks.......
I can't talk about this with anyone, even my husband. And now that my treatments are done and my hair has grown back, everyone thinks I'm "just fine" and everything is "back to normal". Nobody has any idea how completely this has changed & destroyed me.
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I posted here a long time ago but continue to enjoy reading responses. Clearly I forgot about the strong contender response of tissue expanders...I think that chemo still wins for me but clearly there are many choices!
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Annabelle I am sorry to hear how isolated you have felt and I am glad you are sharing this here at least.
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Me too, Annabelle.
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I try not to bug my husband too much - he goes with me to appointments, so I don't want to pile on him otherwise. I don't have anyone else to talk to when I get cancer-headed - and I feel a little guilty when I do, because I've never needed chemo, but after cancer #4, yeah, it does pop into my head pretty often. I have one out-of-town friend I text, but I don't like to dump on her TOO often since she has much worse cancer problems of her own. So I really rely on this place to feel less alone. If only I could find a kidney cancer forum that's as good! I'm on a few, but they're not as active.
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Alice I have a friend who had four cancers, each unrelated, by age 40. She is now 64 and has had zero further trouble from cancer. Nothing in 24 years.
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Having been through this crap originally 8 years ago and a recurrence 2 years ago; I would say losing my hair and tastebuds during chemo was the worst physical side effect. However, my hat is off to anyone who doesn’t struggle with the mental part of all of this. It’s really, really hard not to go to dark places mentally at times
Cancer doesn’t fight fair. Two bc diagnoses before the age of 42 taught me that.
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Santabarbarian, I had two cancers in 2008 when I was 58, and two in 2018 when I was 68. I just can't WAIT to see what 2028 will bring me!
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I asked my mom about the worst part of her treatment so far (she only had chemo, surgery is coming up). Physically, the AC chemo was the worst for her. However, she states that the psychological tremor that comes with the diagnosis of cancer is the worst by far. The uncertainties and the fear of cancer coming back. I have those fears too. I never ever thought mom will get cancer. Although she is overweight and not that healthy, but still it never occurred to me.
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Kkmay - sorry about your Mom’s DX but the fact is just because she’s overweight and unhealthy doesn’t necessarily mean that’s why she got BC. I know scores of women who lived the healthy life and still got it. My sister is one of those people. I’m pretty sure though she and I got it because our Mom had it in her late 60’s.
The fact is oncologists are at a loss to explain why some women dodge it and others don’t. I guess we just drew the unlucky card.
Diane
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edwards750, so true. I'm thin, fit, eat super healthy, never smoked, rarely drink and I have two cancer dxs. I guess I'm a poster child for that bumper sticker:
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Leanness is NO guarantee of avoiding getting cancer, as you can be lean and use Roundup, you can be lean and have a gene mutation. But the question is not "do lean people also get cancer' but "do heavy or lean people have a worse relative risk?" And we know it it less risky to be fit and lean because you dodge the 'metabolic' sources of cancer like inflammation and high glucose. And lean exercisers also have lower recurrences. But chemically- or genetically-sourced cancer can hit anyone.
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me too...healthy eater, exerciser... still got bc...my sister literally acknowledged that she didn't eat a single veggie yesterday...she's never had cancer. You never know. Being healthy is a good thing but no guarantees...
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This is a very interesting question. Thank you for asking it.
I am wondering what is the worst part for those among us who have had IORT (intraoperative radiation therapy during a lumpectomy)? Hugs.
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Cherokee I had IORT with reconstruction and whole breast radiation. There are 2 things that I think may be impacted by it:
- I have a lump where my tumor was and it is still tender. I'm thinking I might be stuck with it.
- I had muscle shrinkage due to radiation and my PT is thinking that it hit me earlier than normal because of the IORT.
Who really knows for sure, we are all unique.0 -
I have not begun my treatment yet, but feel I can already speak to at least one type of "shame" mentioned by several others earlier in this thread: being overweight. I have been obese for most of my adult life (with periods of losing substantial amounts of weight, but then later gaining it back), and was just diagnosed with diabetes last year. Though I literally turned my entire life around the day after that diagnoses by overhauling my diet completely and stepping up my exercise, losing over 50 pounds in 8 months, since I was diagnosed with BC 3 1/2 weeks ago, every doctor I've seen has immediately told me that my weight is most likely a factor and that has caused me a HUGE amount of shame. Like I have literally brought the cancer on myself, as I did the diabetes. The most shameful part of it is that I know it is at least partially true - I have lived an unhealthy lifestyle for years and I am now suffering the consequences, even though I knew at the time that the way I was living was not good. I have been ashamed of my weight since I was a teenager (even though then it was all in my mind - I didn't get heavy until my late 20's) and ashamed that even when I would lose weight, I was never "strong enough" to keep it off. And now I have the added shame of it being at least a contributing factor in making me sick in the very worst way.
And while I am certainly hoping that this diagnosis will be an even bigger "wake up call" than the diabetes has been to keep moving forward with my weight loss and health goals, I think I will always feel the guilt of letting myself go to the point of illness.
I feel like the other ladies mentioning shame in this thread probably didn't mean this type exact type of shame, but my guess is there are probably other women here who do feel what I feel and might feel a little better knowing that there are others who feel the same.
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Thanks edj3. BC certainly does appear to be equal opportunity. And I am actually grateful that my genetics testing came back completely negative, even though a teeny tiny part of me wanted to be able to blame a bad gene for all this. At this point I am hoping that BC will help scare me straight so that I can at least feel like I can have a small hand in making my outcome better.
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oh ((((((((Karen)))))))))) no. Just no. Cancer doesn’t give a rat’s ass. I’m also thin, healthy, never smoked, vegetarian for the most part, and BOOM.
You can’t deny your feelings. Process and get past it. Then do the best you can. That’s all any of us can do.
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Karen - I was a freaking vegan trailrunner with a BMI of ~19 when I was dx'd at the age of 41. I went vegetarian at 16 and have never been overweight. Your doctors are morons. I have this sneaking suspicion that in the future we will find that a lot of the things that have been blamed on obesity will really be environmental problems, and/or things where obesity is correlated but not the cause. I could go on and on with my "crazy" theories on this stuff but I will spare you.
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I can’t believethey connected your weight to your BC DX. Of course it brings with it other problems like diabetes but my MO admitted they don’t know why some women draw the unlucky cards. If you’ve read the so called criteria/risks for getting BC I didn’t fit a single one so go figure.
Don’t beat yourself up about it. We could all make a case that if that’s true why are the thin ones getting DX and not the heavy ones?
BC is not a one size, fits all disease.
Diane
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yes, Karen2019, please don’t beat yourself up about your weight! I became obese while going through menopause and it got so hard to take the weight off that I gave up. Finally, I decided to “get healthy” and get serious about getting the weight off and exercising and I did! And then I was diagnosed with MBC.
I cannot know for sure if the unhealthy eating and lack of exercise contributed OR if the crazy metabolic/hormonal issues I was having caused both the weight gain and the cancer...but you know what....knowing the cause wouldn’t change anything anyway. Maybe it was neither of those things. I am here now and have to deal with what’s in front of me.
Unless testing shows a genetic link, we CANT know the cause for sure, even your doctor doesn’t know for sure.
The best we can do is do our best going forward. It is awesome that you took off fifty pounds, and keeping up our good habits helps with recovery....so keep doing the positive things that you’re doing and leave the past in the past!
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Karen,
I did some things that might have egged my cancer along too (in my 20s, I smoked; and I had nightly drink-or-two) but I do not shame myself for having done that. I forgive myself for doing some things that might have been bad for me, and I let myself take things forward from here, with better choices.
I think you can face the idea that high BMI may negatively effect cancer, but probably no moreso than "more than 3 drinks a week" or "former cigarette smoker," or an array of other past life factors. Nobody shamed me for those things so it's wrong for anyone to shame you (including you!).
Try not to shame yourself -- rather, pat yourself one the back for doing better health-wise now. You do not need to add the shame component to an accurate appraisal of facts!
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I’m clapping and cheering for what Hapa wrote!!! 👏🏾👏🏾👏🏾👏🏾👏🏾👏🏾🙌🏽🙌🏽🙌🏽🙌🏽🙌🏽👊🏽👊🏽👊🏽👊🏽👊🏽
Yes yes yes!!
I too was a total health nut. I went to school to become a practitioner of integrative nutrition and Chinese medicine. That was like joining a cult of people with disordered eating! Then boom! MBC de novo on my 40th bday. I was a dancer, a yogi, did qigong and taichi and meditated.
None of that stuff prevented me from getting cancer.
My dad and my sister eat whatever they want and they don’t have cancer.
I believe in health at every size.
Cancer doesn’t discriminate.
I thought I did everything “right” just as you thought you did things “wrong” and we are all in the same boat.
Some people chose to “clean up” their lives when they receive a cancer diagnosis. That never hurts, but yes yes yes let’s please let go of the shame.
I wanted to blame and shame so many things I have done. It is hard work to let it go. Let it go...breathe and let it go some more...
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I asked my BS and MO about smoking, which I was still doing when diagnosed. Both said that although it has a negative effect on overall health, there was no causal connection with breast cancer. I did quit, though, a few months later, because it turns out there IS a direct connection with the kidney cancer they found. 😱
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Karen your doctors did you a huge disservice and I am so sorry you experienced that! I, too, am thin (BMI less than 18), exercised, ate healthy and here I am. BC just doesn't care. Eventually we will find causation but I suspect it is a little bit like a plane crash. It isn't any one single thing, rather a series of events and genetic happenstance that accounts for the apparent randomness of it all.
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