Which is the worse part of cancer treatment?
I know it is something very personal but I'm wondering wich part of the tx was the worse part to you. The chemo, the SE from the surgery, the rads, the fear of recurrence, the antihormonal therapy? Thank you
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for me, it's the antihormonals. and I am saying this with every treatment fresh in memory and after only 6 months of antihormonals. maybe being under 40 makes this part esp. hard, I don't know
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The worst part? Being stage IV. Although I have done well for 8 years, progression possibilities are always lurking in my mind. It takes it's toll on one, mentally and emotionally, even if I have been fortunate enough not to have had too many awful physical se's. I have switched between all three AI’s, not because of progression, but to try to outwit the se’s. Still, aching joints and bone pain look more attractive to me than progressiondeath.I think the stage IV perspective is different, because we know that chances are not in our favor of it ever ending well.
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chemo ...FAC to be specific
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I'd say its a tie between radiation and fear of recurrence. My risk of recurrence is pretty high even with all the treatment I've had. Also, I was really into financial planning for my future and it all seems so futile now.
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AI's without question. The side effects were so horrific for me that I will never use them again--not even to save my life, since I was unable to live while on that drug. I am beyond relieved to be tolerating Faslodex, and following others who have had multiple years while on this treatment.
Interesting question. Fascinating to read experiences.
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chemo. Red devil, taxotere. Even though AIs put me on a walker, chemo was the worst.
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The diarrhea from Perjeta was the worst experience for me. Because it was so unpredictable, I refused to go anywhere where I didn't have easy access to a bathroom. So I refused to go on long car rides or car rides that involved crossing a bridge (for fear of being stuck on the bridge due to bad traffic) that meant I couldn't visit my mother before she died because it was an hour long drive (without traffic) and involved crossing the bay bridge. (She died just before my 4th infusion.)
Chemo also gave me an abdominal abscess and my port gave me a DVT. But the "D" was the worse part of my experience.
I was hormone negative so I didn't need hormone treatment and I had a UMX and didn't require radiation.
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The last two chemos. Taxotere/Carboplatin. Unreal anemia and mental exhaustion. I could not walk from my car to my house without gulping for air. Lx was a breeze, and rads was a breeze until the last 7 treatments (but it also healed really fast).
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Thank you for your answers. I think the worst thing so far was the surgery. But of course, I just had chemo before it, I still have to do rads and antihormonales. For women in stage 4 there is no doubt that this is the worst, but even in stage 4 maybe you have been better with some treatments than others. Thanks for sharing your experience. Hugs
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Probably the fear of recurrence because that will always be there for me.I’m 8 years out but we all know there are no guarantees. I had IDC, Stage 1b, Grade 1. Surgery was fine and the radiation was too. Tamoxifen was another story. Joint pain and hot flashes were brutal at times. Luckily I only had to take it 5 years.
Diane
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I would say it is all bad. Surgeries, radiation, lymphedema, AI, fear. It all bites.
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Worst part for me also is fear of recurrence. i was never afraid of the treatments ...I had 8 surgeries in 18 months and throw in chemo radiation and AI’s and a bout of severe sepsis🙄 . I knew I’d be able to get through all of it ....and if someone told me let’s do every single one again and it will guarantee it won’t come back, I’d go through it again. Unfortunately I don’t have that guarantee and the fear of it coming back is sometimes paralyzing. I see my onco in two weeks. First time we’ve gone six months without seeing each other and bloodwork. I’m terrified.0
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So far chemo, TCHP, surgery wasn’t easy but not nearly as hard as chemo, radiation was a chore every day for 6 weeks but really wasn’t bad. I haven’t started an AI yet, not looking forward to it
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For me, it was chemo (AC-T). So many SEs to deal with on a daily basis and mentally feeling exhausted from pushing myself to go to each infusion. Looking back, I don’t know how I ever did it.
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I second Marijen's and Wrenn's comments. There has not been one pleasantry associated with having BC but fear of the unknown remains the driving force.
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Chemotherapy, absolutely. I had never felt so physically bad in my entire life. Everything else is easy in comparison. No regrets though. As I approach my 5 year cancerversary, everything else is getting better every day. I worry less about recurrence, due to weight loss and yoga, AIs are manageable.
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This is a great question with interesting answers. I'm not really sure how to answer. I haven't had rads yet, so maybe that will be the worst!
There's not much good to say about it all, but for me the worst is the psychological part. When I was diagnosed at the end of February, I was probably in the best shape, mentally and physically, in my life. Besides the confusion and feeling like I was stumbling through someone else's story, one of the first things I felt was my self-image as "healthy" was stripped away. I was strong and sturdy; now I'm weak. That is mentally hard, worse in a lot of ways than catching sight of my bald self in the mirror.
Along with that is the unknowns for the future. I'm not sure it's exactly "fear." I don't think I'm afraid. But I'm really really aware that bad things could happen, that I have less control over the path of my life than I'd assumed. That my husband, who is 14 years older than I am, might not have me around when he needs me most. There's sadness with that thought.
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MountainMia
I remember feeling that way early on...stripped of my healthy identity. It's a mental trip. I don't know where you are in this process, but I just wanted to say that I now feel strong again. I hope the same for you in the near future.
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Thanks, Scrafgal. Lumpectomy done, chemo done 7/5. Now I'm on hiatus until mid-August before starting radiation. Taking the break will let me see my son's family in OK in early August. I don't want to expect too much, but I'm hoping for some good recovery between now and then.
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worst part, apart from the emotional side of things, is by far medical oncologists and the bullying and nastiness they dish out when you refuse their drugs. Add to that their cytotoxic intravenous drugs they call chemotherapy. Dark ages, grasping at straws stuff.
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MountainMia, you wrote:
When I was diagnosed at the end of February, I was probably in the best shape, mentally and physically, in my life. Besides the confusion and feeling like I was stumbling through someone else's story, one of the first things I felt was my self-image as "healthy" was stripped away. I was strong and sturdy; now I'm weak. That is mentally hard ...
You summed up what I'm feeling: stumbling through someone else's story, stripped away my identity as healthy. I don't even know who I am at this point (which may sound dramatic but man it's true). For me, it's the psychological impact that has been the worst.
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Hair loss.
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Rubyredslippers, you need a new MO. Mine is wonderful.
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For me, it is the SHEER TERROR of the diagnosis. It is the clock ticking on my shoulder, getting louder, possibly getting closer to that alarm...it is the anxiety of the unknown after completing treatment of lumpectomy, chemo, and rads for TNBC.
Take care
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Rubiredslippers: what was the drug you refused to take? I confess that I have thought a lot about refusing treatments (rads for example) but if you are a patient of social security in my country you have to had the whole pack, otherwise they will not provide you with medical care in the future. If I were alone I would not worry but I do not want to be a burden to my family in the future if I can avoid it, even knowing that these treatments are no guarantee of anything
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It is interesting to see what different experiences we have with cancer. I was hoping I could think that the worst is over, but now I don't know. Thank you all for sharing!
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Mountain Mia,
In terms of one's identity as a well, healthy person-- one of my close friends survived several cancers some years ago... she had colon, breast, melanoma. Nothing further has happened in about 20 years, and she is going strong. She was a great resource for me.
She said, "Look, you're a good apple with a brown spot. They're going to cut out the brown spot, and you'll go back to being a good apple."
It was comforting to me, and I hope it comforts you too.
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santabarbarian, yes, thanks. I like that thought.
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BellasMomToo: I'm sorry that you were not able to visit your mother before she died because of the chemo SE's, as if the treatments were not hard enough. Hugs
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I am also in the fear of recurrence being the worst. Treatments and diagnosis all suck, but you get over it at some point and hopefully not struggle with too many long term side effects. The idea that we go through all this hell and then still have to worry that it might come back...like a cruel, sick joke by someone ugly. And that worry is always there, unlike healing from ugly treatments. As long as we are fortunate not to die of the disease, the black cloud hangs and some days, it is relentless and dark and as bad as any treatment can be.
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