Which is the worse part of cancer treatment?
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Some of the healthiest people around get this disease. Don't let anyone tell you that it was something you did or didn't do. Ask the top oncologist professionals they will tell you no one knows why we get it. Whether it is genetic or environmental no one knows for sure.
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Thank you everyone for your kind and encouraging words. I am doing my best to dump the shame. The cancer shame actually isn't as bad as the diabetes shame, and I have made good progress at getting that under control. So I'm hopeful that by getting back on my plan (which I will admit I have fallen off of since my cancer diagnosis - eating is one of my main sources of comfort, unfortunately), I will be able to deal with everything better. I'm so glad this forum is here, as it has been a huge help already.
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Ladies: thanks for sharing!
Karen2019: I wish you the best in your treatment, good luck!
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I was diagnosed in Sept 2017 and my cancer was fairly advanced. I knew I’d have a long row to hoe so I just took one treatment at a time, starting with chemo.
Every treatment stage I was going through I thought was the worst at the time. Chemo, mastectomy, infected expanders, radiation, reconstruction, lymphedema, hormonal therapy side effects.
But I agree with an earlier poster. I would go through it all again if it would guarantee no recurrence.
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This may be TMI for some, but going into menopause at 45 and having hot flashes and a dry vagina is the worst! I feel like I’m always sweating and scratching myself!
Sex can be painful, which is a bummer and nothing I’ve tried, like KY liquigel beads and Vmagic seem to help. I think now my own stress about it makes it even worse - it’s like my V has shrunk honestly.
Anyone else? Any solutions
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VL22: There is a great thread on this topic called "I want my mojo back". It is a huuuuge thread... It seems to be a very common problem, I still don't get there but I'm going to take antihormonals too so I expect something similar ☹
Pd: It is not like I feel very sexy right now
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EVERYTHING was BAD! I didn't know life could be so awful. I thought about death and dying every day for YEARS. It was, and in many ways still is, a prison sentence with no possibility of parole.
The inhumanity of what was done to us all. That they call it treatment, when it is so enormously erratic, and dare I say unsuccessful, for so many women. That the bc industry admits to 44, 000 women dying each year, and I fear the numbers are actually much higher.
Scares the crap out of me when the bc doctors made me feel like I was never safe or cured, just always on borrowed time. I avoid them all like the plague now.
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Macb04: I have been following your story. It's scary what happened to you. I'm very sorry!
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The anti hormone therapy. Chemo, surgery, radiation is done. But hormone therapy goes on for years.
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Thanks Yndorian1, I appreciate the support.
This is actually a great thread. You have asked a rare and insightful question.
Newbies coming along should know the truth, not the sanitized, Pollyanna BS type "Rated G" version that the bc industry, TV and movies portray as reality.
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The truth should be brought to light. Better treatment is needed. We should not have to sacrifice good health to fight this disease. Hormone therapy did a number on me. I believe I have permanent side effects. The hit my bones took was significant to me. Although the bone scans say my bone loss was average for a woman my age. Still, I aged so much from my AI medication. They down play all the treatments, radiation was suppose to be practical no risk then you read what happened to macb04. Her doctor talks about "badges of courage" and how BC patients should be proud of their battle scars. I say screw you lady, how dare this doctor talk about what is an acceptable compromise for killing cancer. So sick of all the pink crap rallying. I will only talk to real BC people the ones living through this.
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Meow, it looks as if we have more than an affinity for the feline species...I completely share your attitude! It’s insane and barbaric what passes for cancer therapies these days...
don’t you feel, at times, as if some of the chemotherapy agents still being used today are so ancient, it’s possible they were first mentioned by the Egyptians?
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Newly dx w/stage 4, just moved to another state and waiting to get hooked up w/MO for treatment. Worst part for me has been something no one talks about.....29 years post chemo, it's still brutal to get an IV started. That was way b4 use of ports to administer chemo. Can't use right arm due to node dissection, left arm is ruined from chemo. I'm so over the digging to find a vein. I know some centers have ultrasounds for iv placement. Never lucky enough for that. Most horrible experience was in prep for CT scan, it took 4 different nurses 3 tries each b4 I asked them to call anesthesia. CRNA came down and bingo, got it first try. It's even harder if you have to be NPO for a procedure. Being dehydrated is the pits for vein access. Just dread all the IVs I'll need as a stage 4 patient.
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GoldensRBest: The veins thing is HORRIBLE! My MO didn't want to authorize a port ... The last IV were very difficult! I am very sorry that you have to face all this again. Hugs
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Separating the worst part, and merely the worst part of treatment - I had the hardest time with chemo. I'm not done with rads yet, but I only have 5 more sessions and so far they've been pretty easy (knock wood!).
Chemo was tough, but my memory is fading already, so I can mostly remember how I reacted, not how I actually felt.
Surgery was a sharp and relatively quick pain, worse than chemo in its intensity, but over relatively quickly.
Radiation is mostly a grind. The daily commitment, building my life around treatments when it is otherwise approaching "normalcy", is wearing on my last nerve. But the physical side effects have been manageable.
I'm going to start therapy soon for my mental health. I consider that part of "treatment". I'm super good at denial (in case you couldn't figure that out from the above!) and I suspect I've got a lot of monsters under the bed that I've just ignored so far. I'd rather tip the bed over and scare them out into the daylight where I can deal with them then let them lurk in the dark, getting stronger!
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Actually i HATED my port and had it out half way. For 6 needle sticks???? What a mistake.
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Fear of recurrence and SEs from Femara.
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I had some baby doctor, "being supervised", that I didn't even know was there, put the F*CKING PORT IN CROOKED.
The bs ( think that really stands for bull sh*t) overseeing the procedure supposedly had 20 plus years of experience. Didn't actually say what the 20 years experience was actually in. I have a SNEAKING suspicion that he had already left the room whem the baby doctor put the port in at a TILT.
Only 1 women in the Entire SCCA building could access the port without stabbing me repeatedly in the chest, painfully, multiple times. ( There was a painful lidocaine shot, which only partially worked, and stung like a Bee Sting....., get this...., due to a Nationwide shortage of Sodium Bicarbonate, is what I was told) Yes folks, the torture was even worse because there was a shortage of the medical version of Arm & Hammer Baking Soda. I kid you not.
I was too out of it to protest, but silly me, I thought the F*CKING port meant it wouldn't be so painful. No one figured it out because the great david byrd of scca, had put it in and obviously he didn't screw up like that.
It wasn't till painful, painful months went by that I happened to get an Xray of my shoulder, that included the port, that I found out I had been screwed over by the bc industry doctors, AGAIN. The Xray technician blurted out " OMG, your port is crooked" I said WHAT? He said he had been doing XRAY port surveillance at the University of Washington for 20 years. Then he clammed up, said " My wife says I have no filter" , and wouldn't say anymore about it. I found out the scca doctor had completely screwed up.
I have a scar there from the port that I detest for a number reasons, one of the biggest things that makes me have BOILING RAGE from the whole sh*tty mess, is due to that lazy, incompetent QUACK, I suffered for no dam reason.
This stinking bag of excrement they call " treatment " is bad enough without sloppy doctors being too lazy to do the work they were paid for.
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They will never admit they screwed up. It is so hard to trust doctors. I am extremely cautious of any prescription drugs from my experience with aromatese inhibitors.
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I'm on infusions "for life" and I don't have a port and don't want one. My veins are on the "difficult" side but the nurses and I persevere. They have a choice of either arm so they are able to find a spot somewhere - wrist, hand or arm. My infusions are every three weeks. Now that I'm on Herceptin and Perjeta, it is less damaging than the Taxol was.
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My veins are shot. COMPLETELY DESTROYED. That's another stupid thing the bc industry could have told me about, warned me about. I would have skipped 99% of what they inflicted upon me, had I but known the true measure of permanent life destroying side effects like destroyed veins. Never feel safe, and know lots of people who have died doing things the bc industry way.
I could loose my job because I am unable get a blood test for TB drawn. My job is with a big, heartless healthcare institution that preaches love and compassion, just not for their employees.
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For me it is the ongoing uncertainty, not only of metastases (I try to block that one out of my mind), but side effects from hormonal therapy, lymphedema or any of the other surprises that seem to be a routine component of this disease. Just when I think I am on the path to my new normal something seems to creep up and send me a couple steps backwards - Chutes and Ladders anyone?
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Love the snakes and ladders analogy - it is so accurate.
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FindingOptimism: I think you have wisely summed up the thoughts of many of us here. At least I find in your post the exact answer to my original question ...
I think I could go through the most terrible pains if at the end of the tunnel I could go out with the same health I had before...
Hugs to you all, ladies
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Yndorian - how is your radiation going. I hope you are keeping well.
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Giddyupgirl: Thanks for asking. You are so sweet. I haven't started with rads yet! All this delay is driving me crazy, I hope next week is my simulation appointment. I recently had my CT for simulation ... the position of my arm on my head was a bit difficult, but I think that these days I'm improving that ...
It's been almost a year since my diagnosis ... This has become a very long process for me.
HUGS
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Yndorian - Dragging it out makes it that much more stressful. They delayed my rads to give my incisions more time to heal. I used the time to have some fun and pretend all was normal before the daily grind of radiation. Your shoulder will get used to the position and it will get easier after each time just remember to stretch before and after to keep it nice and loose.
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the worst for me was not being able to taste or enjoy food especially for the last couple of full on chemo treatments. Could only eat a handful of boring things, that is if I could keep it down. Took months to get the taste buds back to normal. There are still some (a few) favorites that I can't eat. Post chemo by 1 year, 1 month.
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FindingOptismism - Chutes and Ladders! That's exactly it. There’s so much uncertainty ahead and you just don’t know what sort of side effect might be around the corner.After I'd finished chemo, someone asked me what the worst part of all my treatments was and I said it was not knowing if any of it worked.
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The worst is that the worst changes day by day, minute by minute ... Thank you all for sharing your experiences.❤❤❤
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