Summer 2015 Rads

vogliodipiu

i am starting radiation on october 20th, finished chemo almost 3 months ago and still waiting to feel better. i am still below 90 pounds (i stopped weighing myself at 88) and my legs burn when i stand in the shower even, had to sit down to take a shower. when will there be improvement?? i am having a bad day..a bad week. i had my lumpectomy august 28th and at least that is healing well. i am dreading radiation and i just want to get better. everybody keeps congratulating me on finishing chemo but i feel the same..weak, shitty, no appetite and even when i think i am craving something i have 2 bites and then get nauseous.

will this ever be over??

Jbandkb1

Hi ladies new to this board. I've been trying to read past posts. I'm sure this question has been asked before. I haven't started radiation yet and won't until sometime in February. I'm scheduled for a BMX after Christmas with the removal of both nipples. Radiation has recently been added to my treatment. Because of this the incisions on my breast will only be about amonth old. I'm afraid radiation will damage my skin and incision. I'm fair and sunburn easily. I haven't meet with a RO yet so don't know what advice they would give. Can any of you who were in similar situations recommend a cream/lotion to use to help prevent any issues? Any information would be helpful.

Kimmer33

Hi Ladies

I am looking ahead to rads in February (16 sessions), and also planning a big trip in May.

I am wondering how all of you feel after rads are finished, and how long it took you to feel "normal" again. My RO said that fatigue and side effects could continue for up to 6 weeks after finishing rads. So I wonder if I will be able to travel and feel good 2 months post rads. Thanks for the info!

Kim

ORgal

Kimmer,

I think it is really different for everyone, but I also think that 2 months post rads should be pretty safe.

For me, I worked 40 hours a week during rads and had no major burning. In fact, I was camping the last few days of rads and drove to my appointments from the campground. For me it was just nice escaping work so even though I was pretty red and swollen, it was nice getting away.

I'm sure others will post their experience.

CAMommy

I did everything my RO said and I burned badly. Seems most don't burn that bad.

It took me about a month after rads to feel 100% better with my old energy.

Midgiemoon

I was back to work 2 weeks after radiation. I had a good amount of burning which prevented me from dressing professionally, so I needed that time to heal up. I felt great, until I started tamoxifen. I am adjusting, but could do without the side effects!

AndreaC

Hi Kimmer - I'm in BC too - on the Island.

I finished rads Sept. 24 and feel pretty good. My skin was fairly burnt and blistered but healed up really well. Now it is intact and looks just like a weird tan. I was somewhat fatigued during rads and had a nap most days but don't now. I think you will be in good shape for your trip in May!

I started on tamoxifen midgie but have gone off it for a while because I am having surgery Nov. 19 (removal of uterus and ovaries) and tamoxifen causes bleeding. While I was on it though I experienced a lot of joint pain...knees, hips, elbows, shoulders. what side effects are you having? I read that the side effects diminish as your body gets used to the drug.

Andrea

ksusan

I noticed last night that more of the February surgical swelling has decreased and my torso/underarm/side shape is shifting to more normal at the 2-month post-rads mark. Hooray!

Kimmer33

hi andrea, thanks for the info. Curious why you are removing ovaries and uterus? I am considering it just to have one less thing that cancer can invade

AndreaC

Kimmer -

I am having the surgery as a precaution. I am not sure about genetics...I won't have genetic counselling/testing till next year. But my gynaecologist thinks the surgery is wise. I had colon cancer in 2013, and bilateral breast cancer this year. Also, my grandmother died of uterine cancer and I have other cancers in my family (no breast that we know about though).

Andrea

april25

vogliodipiu -- I lost 30lbs during chemo as was totally a weak, anemic mess. I was worried that I wasn't well enough for my LX, just a few weeks after I was done... BUT my weight loss was because of SEs and once chemo was over things started to slowly improve. I had weakness in my legs due to neuropathy... and that takes a while to get better, but I felt it getting better and that was encouraging. My appetite came back, so I was able to eat. My GI tract is still a little messed up 7 months later! But it constantly improved.

The upside was that after chemo, the LX and RT were a total breeze! (I was lucky, of course, but some people breeze through chemo, too.) I know many people have a horrible time with RT, but I just got very red and brown and freckly and hot, but no skin breaks. And the whole breast improved once that stopped and I was just getting boosts, and the redness of the boost area went away quickly for me. I ended RT in July and still peeled a bit after, but that was OK. My skin only looks slightly darker and I don't see that rectangle of the treated area at all. I still have brown spots, but not as dark. They haven't peeled off--mine are just like freckles.

Anyway... I hope you feel better soon, and don't worry about surgery and rt. The worse part is the uncertainty--will I burn or not? etc. But you can't KNOW until it happens. Assume you won't get the worst SEs until it happens. It's pretty much the only way to get through stuff like this.

Jbandkb1 --- RT can slow healing and make skin more fragile. On the other hand, it might not! If it helps at all, my RO said that in his experience, people with delicate, fair skin usually do better than you would think just going by skin tone. But you never can tell. Try to see what the RO says and ask questions and try not to anticipate the worst, since it may never happen.

I was lucky with RT. My incisions did just fine.

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Possible nerve problems from RT--- 3 or so weeks after RT I started to feel a little weakness/ache in my arm, when trying to raise a full coffee cup, for instance. I just asked my BS about it (Just had my 6 mo followup), and he said it MIGHT be that the RT could have affected the nerves in my arm. He told me to see a neurologist. I'll get back to you all on that.

He asked if I talked to my RO about it, but I hadn't been sure what caused it... was just throwing it out there as something in order for him and my MO to figure out what it might be... I haven't seen my RO since the 2 week post RT followup. I might ask them about it, now that I know the RT could be the cause.

I had some chemo-induced neuropathy, so maybe my nerves were already negatively affected and then the RT came along? I guess I'll check with the neurologist. But I know from seeing him for the chemo-induced neuropathy that there is very little to be done about nerve damage. It either slowly gets better or it doesn't! Any pain or other symptoms might be controllable, but not the main problem. So we'll see!

Hardness/lumps in tumor bed area -- I don't experience pain from them, but it's there, 6 months after my LX... My BS said that the RT boosts in that area probably contributed to the hardness/swelling/seroma whatever it is!

Good thing-- means I don't have a big divot in the area so far! I have small-ish A/B size breasts (which also might have helped me escape some of the bad RT burns), and taking a lot of tumor out might have made for pretty deformed breast... but so far it looks very close to the other. So in a way, it could be bad once the fluid/seroma is absorbed!

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After-Treatment-Blues And Scans/Appts. after RT

I felt that way for a while, too. But I think time just goes on and other stuff comes up and you just stop thinking about things so much!

I had chemo (first) so my MO was pretty much my primary (although I do have a general doctor/internist... but he's secondary through this whole cancer thing). I am still seeing him for Herceptin every 3 weeks. And after RT I saw him for Hormonal treatment, too! And I pop into the hormonal treatment threads here to check about side effects for THAT, so I'm not by any means finished and off to a normal life yet!

And yeah, my sister was all "you're finished!!!" after RT! I was happy for HER, since I'm sure she was relieved. She got me a little cake and everything! Of course I'm FAR from finished. And I am not going to ever call myself cured or even Cancer Free. I COULD be, since I had chemo and surgery and RT, and if that didn't kill it or get it cut out, then... whatever. My takeaway is that there's always something out there that could be bad news, but that's life. Just need to concentrate on the day by day and try and enjoy what we have, I figure. And my life and views haven't really changed, even though all this has happened. I sort of wish I'd have had some grand epiphany, but I seem to be much the same as I was before, and hey, that's not a bad thing, really. I'm lucky to be here and pretty much the same person.

SO... I just went to my 6 month follow-up for LX and had a mammogram on the affected breast. They had me make another appt. with my BS 6 months from now with a bi-lateral mammogram. So I'm guessing that I'm seeing my BS and getting mammos every 6 months! That's OK by me. Of course, my tumor wasn't found by a mammo. I had them. No findings until I found a lump myself, and it was already 3cm! So just mammograms make me a little nervous. But the ones I'm getting now are at least the digital kind, a slight step up from the old ones.

And I have my MO still looking after me, but less often after my Herceptin stops in a month of so. I'm not sure what schedule I'll be on with him, but someone mentioned 6 months, so maybe?

I'm going to be on some sort of hormonal for at least 5 years... (people keep talking about the 10 years... but I figure I have 5 years to work that out!).

ORknitter

Just wanted to wish all my fellow summer campers a Happy Thanksgiving

Alibeths

does anyone have rib pain/soreness

ORknitter

Ali, I have "muscle" pain under my arm. I didn't have any nodes taken so I know it's not that. I'm pretty sure it's from rads as the machine was pointed there on the second zap every time (maybe to hit the nodes?). Have you asked your RO?

ksusan

Yes, I have pain in my lower ribs on the radiated side.

meezers3

Yes, my ribs and sternum are very sore. RO told me I have costochondritis and my cartilage is inflamed. Definitely feels like my bones hurt from being burned. I was told to take 3-4 Advil. Some days it just doesn't help. I also have pain in my breast. Really can't wait to feel better, this is so frustrating.

april25

Oh, that's terrible to have the ribs aching like that! They do warn of rads making ribs weak and all that, but really, you'd think they could try a little harder to not affect parts of the body that don't need the rads...!!!

I have been lucky and have experienced no rib pains so far (finished in early July).

I did, however, start feeling a weakness and slight ache in my arm... just in lifting a cup of coffee--that motion only! At first I thought it might be muscle/joint aches from the anastrozole, since it started after I began taking it. But my BS thought it might be nerve damage from the RT, and that makes some sense since I'd just finished RT before I started the hormonals... he recommended I check it out with a neurologist. --but I'd seen a neurologist for chemo-induced neuropathy and they pretty much can't do anything but test to see if it IS nerve damage. I guess I should check it out just to know for sure...

I have to change my insurance, so that's making things a bit more tricky with my doctors (some will not be on my new plan). I had to do this last year when I was first diagnosed, which was worse! Still, mucking about with all this totally confuses me. I have no brain at all for accounts and figuring plans out. Mostly I have to choose the ones that my most important doctors are on, so that limits things anyway.

Alibeths

someone said Rads is the gift that keeps on giving!!!!

meezers3

Alibeths that's what it's been like for me so far. Seems like I will never recover! Can't wait for that to happen!

Metta

Yes, alibeths, meezers, and ksusan, me too. My ribs ache badly sometimes, just as bad as when I was in radiation. I wonder if it's our bone marrow struggling to bounce back and produce white blood cells. Now that I know it's happening to you guys, too, I'm going to stop worrying about metastasis. Chalk it up to "odd." Thank you for being here! I just donated because this site has truly helped me

Stix

klanders. how are you doing?