Long-term side effects of treatment?

lagaviota

Hi,  I'm wondering if others question whether current health problems are a long-term side effect of treatment, and if so, what kinds of problems do you have?

I was dx 13 years ago and am starting to think that perhaps my current vision problems and potential thyroid issues might be related to the aggressive treatments they gave me back then.  They don't give the same treatments now to someone of that age with the dx, according to my oncologist.  But I don't really find any information online about other younger women discussing these issues, so I thought I'd post here and ask the question.

For me, I think:

1 - I'm going to start menopause soon, if not already.  I feel lucky to have had my period this long though I've never been able to get pregnant and the doctors I've seen have never been able to figure out exactly why.

2 - Vision has gotten really wonky.

3 - Thyroid might be an issue.  Trying to get that sorted out by seeing different specialists.

I just refuse to believe that I was given tons of chemicals at a young age and that everything that happens now is related to age. 

lollypop59

yes my vision have not been good for the past good few months  in my right eye its like a midst vision, i have had my eyes tested and i at to have a eye screening test because i am diabetic, and they both said it is the chemo that caused  and it takes time to go. so we will see / i hope this helos you.

lollypop59

sorry about the spealling i said my eye was playing up,  LOL

LtotheK

Congratulations on your wonderful long remission!  That is the best news.

Unfortunately, there are not a lot of studies about us youngin's.  It's why the Young Survivors Coalition is proactive about saying in fact, BC in this camp might be a totally different ball of wax.

It's hard to parse out which things are age, and which are chemo-related.  But I can absolutely say this:  I'm not the same, and my natural aging process has been speeded up.  Going into premature meno is what did most of that for me.  I still look "normal", but I basically feel like a 55 yr old in a 41 year old bod.

o2bhealthy

I just got biofocals last month...was dx with Thyroid cancer 1 year, 5 months and 15 days after my BC dx...my muscle in my legs tire very quickly and ache most of the time...my feet hurt if I try to wear real shoes and are super sensative to hot and cold...I have trunkal and bilateral LE and cannot seem to lose the 40lbs I put on during chemo and after dx.  I just turned 40 this year...

PattySprout

First - congrats on 13 years.  That is awesome.

Yes, nobody seems to care about the long term affect of treatment on us. Yes, I am totally happy to be alive, but really - menopause is not cool. 

I just want to note that thyroid disease is VERY common among women in our age bracket.  I don't know if you can pin it on chemo.  Some thyroid disease is autoimmune, and there are theories out there that cancer has an immune system component.  I personally think that people who are succeptable to autoimmune diesase are more likely to get cancer, and vice versa (based on my own thoughts, no studies or anything). 

I have had thyroid disease since before cancer.  And, I will say it has been getting worse, messed up, in the last year or so.  I never even thought to blame it on chemo. 

But, for what it worth, my vision gets better every year. 

LtotheK

"Yes, nobody seems to care about the long term affect of treatment on us. Yes, I am totally happy to be alive, but really - menopause is not cool." 

True that.  I realized the question was really what SEs we are having.  Thought it was worth listing them.  Those I believe "maybe" are related, but could also be age (41):

Reading glasses coming soon

Thyroid elevated, never was even a hair before chemo

Arthritis in joints I broke or damaged, happened rapidly after chemo

Increased joint pain

Things I believe are of course related to chemo:

Premature menopause

Osteoporosis of the spine

Dry skin and body parts

Chronically low white blood cell counts

Receding hair line

hereandnow

Wow lagaviota on 14 years, just wow.

Don't think that there aren't individuals and teams looking at what are called "survivorship" issues. These things are being considered, and that is why someone with a 2 mm IDC will be treated completely differently to someone with a 3cm IDC.

Risks and benefits are debated sometimes heatedly at oncology meetings. These debates are distilled down to the conversations we have with our treating team.

Kick arse chemo was what was recommended from this process for me, but it really kicked my arse. Took 12 months post to get my mojo back.

We must trust that the professionals advising us are looking for the best outcomes for us, no one else, and when we are being overwhelmed with all the new information, these people are part of a wonderful modern research driven team, who will share the risks and benefits of our options.

Again, congratulations, I hope I get to where you are.

xxx

SAOIsenberg

It's so hard to tease it out. I am 10 years out from my first dx - aggressively treated at 32. To play devil's advocate, I had already been dx'd w/arthritis (psoriatic, several months before my BC DX), and that actually got better after chemo (waxes and wanes). I have worn trifocals since my mid-twenties and vision is no worse now at 42. I had almost no noticeable long-term changes in my left breast that was irradiated (although now, after being dx'd w/second primary and having reconstruction, that side is acting differently during the healing process b/c of the radiation). I got my period every 30 days, all thru chemo and beyond. My cycles are starting to shorten now at 42, so likely peri-menopause, but this could be normal and not as a result of chemo +Tamoxifen - all the women in my family have had hysterectomies so I have little clue as to what to expect in this area. And as PattySprout said, thyroid issues are common - hard to tell if they're related to prior tx.

All that said, I am totally with you that there HAVE TO BE effects from having been pumped full of chemicals, etc. I think they're different for different women and that there needs to be a lot more emphasis put on long-term survivorship issues - this is a hot topic right now in the press, etc. I do have osteoporosis/osteopenia which my onc and endocrinologist believe were caused by taking Tamoxifen and that bites.

Hoping you get your stuff sorted out and that you get relief soon!

Sarah 

hydeskate

I got tripled whammed...out of the gate at Stage IV Triple Negative Breast Cancer @ 29,oh yeah bad family history and I have BRAC 1 gene....I cruised right thru Chemo no side effects, until the Pharmacist decided to jack the dose age to the max to see how long before I started to feel something, lasted about four treatments,  T

he doctors straight up said your young we have no treatment plan so we are going to wing it....they winged it right into NED and I have been off Chemo since Sept 09....but wait I started to have all this  issues following treatment, ONC ran all kinds of test and said it was cancer she immediately suspected an Autoimmune Disorder and sent me over to a Rheumatoligst....who ran a few tests oh..ummmm....yeah you have Sjogren's Syndrome, so I have a dry mouth, joint pain/swelling, dry eyes (the just put plugs in my tear duct), and dry skin....plus 3 more specialist doctor eye, dermatologist and Rheumotalogist

I still work full-time, go to/and work sporting events, skating, trying to get my ONC to sigh off on Roller Derby......Thank-fully I have a high pain tolerance and I am fine when I am up and moving around, but as soon as I sit down to relax everything things aches or straight up hurts thank-god for oxy and muscle relaxers (sadly means no more beer)  But on the bright side I just have to get scans no chemo or rad...

hydeskate

I got tripled whammed...out of the gate at Stage IV Triple Negative Breast Cancer @ 29,oh yeah bad family history and I have BRAC 1 gene....I cruised right thru Chemo no side effects, until the Pharmacist decided to jack the dose age to the max to see how long before I started to feel something, lasted about four treatments,  T

he doctors straight up said your young we have no treatment plan so we are going to wing it....they winged it right into NED and I have been off Chemo since Sept 09....but wait I started to have all this  issues following treatment, ONC ran all kinds of test and said it was cancer she immediately suspected an Autoimmune Disorder and sent me over to a Rheumatoligst....who ran a few tests oh..ummmm....yeah you have Sjogren's Syndrome, so I have a dry mouth, joint pain/swelling, dry eyes (the just put plugs in my tear duct), and dry skin....plus 3 more specialist doctor eye, dermatologist and Rheumotalogist

I still work full-time, go to/and work sporting events, skating, trying to get my ONC to sigh off on Roller Derby......Thank-fully I have a high pain tolerance and I am fine when I am up and moving around, but as soon as I sit down to relax everything things aches or straight up hurts thank-god for oxy and muscle relaxers (sadly means no more beer)  But on the bright side I just have to get scans no chemo or rad...