Fall 2013 Rads

L2girl

Hi, Bounce,

Sorry I didn't reply earlier. Seems every night I think I'm going to have some time, but never do. Your cabbage story was really funny! Also, hope you are sleeping better now and better mood.

My pain has actually been getting better. I haven't even used the ice packs the past few days, or even longer? Now they are only painful if I press on them, or lie on them. (Btw, when I did use the ice packs, it was for 20 minutes each night. The MO never told me how long, so I just did that.) I never did go the RO to get checked  because it is getting better. But you are right, since he is the one who broke me, he should be the one to fix me. So if need be, I will make an appt. with him.

I had some issues with mood awhile back, and wasn't sure if it was due to tamoxifen, or just dealing with finishing active treatment and realizing the trauma I had gone through and never really processed before and the fear of recurrence, etc. But a few weeks ago my mood completely changed for the better. Now I am just so happy every day. I can't even explain it, but I just love life right now. I catch myself smiling all the time. I pay special attention the beauty of things around me. 

Mrs P, I also hate the granny bras, but I don't think I will ever wear a real bra again!

Canuck, mckatherine, rainy day, and everyone else, so good to hear from you all again!

Bluebird, how are you doing?

Hugs to all!

Bounce

L2girl - so glad to hear you are improving.

My Mom suggested ice packs but for some reason I really don't want to try it!  It just seems way too .... cold.

I think my mood is really hormones because it changes!  I went through a week and a half where I cried if I heard anything even vaguely sad or emotional and cried if I heard anything touching etc etc.  If I had had a period it would have been about then - so I am blaming Tami and trying not to get bogged down.

I did a very gentle yoga class this week but my boob didn't like it much!  Seems a bit more sore the day after - but manageable so I will go again next week.

I rather like the saying:  What doesn't kill you makes you stronger.

Bluebird - I think of you a lot.  I sent you a PM but turns out my brain wasn't working and it went to someone else.

LisaSP, Kirklandgal - so many people (with funny usernames that I can't remember) I hope you are all doing well.

Hugs

McKatherine

I definitely hit an emotional wall a few weeks after I finished rads.   I blamed the Tamoxifen, though.  

Just a FYI to any BMX sisters out there - I had my pre-op with my plastic surgeon today, and found out that being post rads limits your reconstruction options!  Thankfully it didn't change my plans (I didn't think I wanted nipples anyway), but it did surprise me a bit.   

So good to see updates from all my radiant friends!  

cakes

McKatherine,

If you are feeling up to it, please tell me how the radiation limited your reconstruction options. I am still having issues with radiation affecting the healing of my partial mast scar and was told by a PS, I consulted with, that it is due to radiation. Maybe your PS was more informative than the one I consulted with. This PS made me feel bad for having rads. 

Shine On Sister

FierceBluebird

Bounce, changed my name to Fiercebluebird.  It really should be wimpy bluebird, but Fierce is what I need to be.

Still having lots of radiation side effects to breast as well. four months later. 

Bounce

Hey there Fierce glad to hear its you.  One and the same bird - not me sending PMs to a stranger.  Yay.

Good for you on the name change.

Do whatever you need to to psych yourself up.

Whenever I am doing poorly I mutter to myself  "I make Rambo look like a little baby".  After I say it enough times I begin to feel tougher.

Hope you feel better and better each day.

How are things going?

Hugs

FierceBluebird

One month ago today had my skull split open to remove the tumor, so I'm doing pretty well considering! My vision has improved greatly and no more hallucinations. hallelujah! 

My radiated breast is giving me the most pain right now. It feels extremely tight and sore in some places. The dark skin coloring is finally fading thank goodness.  

Rambo is a big baby! Carrying around the biggest guns in the world won't make you a tough fighter!

McKatherine

cakes - I had a traditional BMX (not nipple sparing) and thought they would go in through the same scars for the exchange.  My PS said that the outcomes are not as good if they do that after rads, so she'll be making a new incision in the inner-mammary fold.    If I'd known that, I probably would have spent more time massaging /putting lotion on the scars.  

So, I'll have two sets of scars, but that beats a failed recon!  

I was leaning toward not getting nipple reconstruction anyway - but my PS  said the rate of necrosis, infection, and nipple failure is much higher in post - rads skin.   

Shalimar630

Hello all, its been awhile since I posted for sure. 

I have found it very confusing to determine who to contact for what. I'm still not sure where the line is drawn regarding what to ask my MO. It seems whatever I ask her, she refers me back to my PCP. I guess I just assumed she would be taking over care completely. My next visit with both my RO and MO are six months out. I thought I would be seeing them all every three months. That would certainly make me feel better. I showed up a day early for my BS appt last week so changed it to next week.

I had a lymph node biopsied a couple weeks ago which has been bothering me for months, but it came back okay. The thing was, before I got my results my MO called and left a message saying she wanted to talk to me about a recent test I had, which really freaked me out of course. She was actually referring to my bone density from January. She wants to start me on Fosamax. I am still researching it. Spoke to my dentist today about the reports of jaw necrosis. Scary, but it seems pretty rare. 

I also have had some mood issues. Feeling a bit better currently, but had a couple of down months. After reading some previous posts, I'm wondering if it was because I had recently started the Arimidex. 

Regarding the bra discussions. I have also chucked the underwires. I had a lumpectomy and can wear my regular bras alright, but I notice when I take the bra off at night I am more misshapen for a bit. Not sure why this is. Looks strange. 

Sending good thoughts to everyone!

Shalimar630

Oh, I've also noticed my eyebrows are thinning out again. I thought I was imagining it, but now I don't think so...

Lav

Hello ladies nice to see this chat is still active.  Ive missed you all and no matter who I talk to noone understands me better than all of you who are going thru the same situation.  

I have all the same SE thinning hair,thinning eyebrows, mood swings,and the depression is just horrible.  I just sit and cry at times for no reason at all.  I had alot of hotflashes as well as joint pains in the beginning even had a bout of H1N1 right after rads it seems radiation actually murdered my whole immune system but I have slowly regained it back all thanks to alternative medicine.  I exercise eat the right food ,take alot of vitamins that my body had a deficiency off.  I dont think I would be alive without my alternative healing.  The depression made me want to jump out of my 7th floor apt!

Now the depression basically hits me hard a week before my periods and the week of my periods but its bearable atleast.  My Oncologist is against my alternative healing but I really dont give a damn what he thinks especially since I feel better, alive atleast.  And if I do have thinning hair and eyebrows and the depression then tamox is doing its job too.  I have put on weight and exercising just helps to control it.  Cant seem to loose the weight.  Seems to be a slow procedure.

For inflamation I would suggest try taking 1 teaspoon of baking soda in a glass of water.  Every morning before you have anything else. Basically on an empty stomach.  Hardening of the skin,one breast larger than the other,skin drying up.  Went thru all of that too.  

Wishing all of you all the best in our fight.  We have to remain strong or we are going to sink into this abyss of cancer again.

Take care and lots of hugs to all!

Kruise

hi everyone - and Lav hun hope things are going ok for you at the moment. I totally agree with you on the natural healing stuff - been the best thing I ever did for myself. I too think I get bouts of depression on the tamoxifen - it suddenly dawned on me the other day that's what it was!!? I'm depressed I can't lose the weight for starters!! If I lose a couple pounds I put it back on and then some with food cravings and binges. Am I the only one finding losing weight hard????

Shalimar630

Hope this finds everyone doing well as we are entering the crazy season. Wishing everyone peace and happiness!

Kruise

Thanks Shalimar630 - same to you and everyone else on this thread!

Hope you are all doing well and you have a wonderful holiday time with your families and friends.

McKatherine

Lav - I've been dealing with cyclical depression and anxiety, too. Not a fan of what I feel certain are tamoxifen SE, but I'm sure my MO will say it's not causing them . . .

joannaraku

I - haven't been on for a long time. Dec of 2013 I had a lumpectomy went through radiation and my breast never stopped hurting. I went for my 6 month mamo and they saw something, then went for an MRI and there is a mass in my breast that was operated on and a lump in my other breast, they sent me to my surgeon, she felt that the mass was a reaction to the radiation and the lump was from the radiation and she wasn't willing to cut me open again because it hadn't been a year, come back in 3 months So I did and the mass is bigger, so now in mar I have to have another mamo and she will decide what surgery she will do. I am on the hormone pill and I have felt many a day that I was losing it. Don't the the emotional roller coaster. Has anyone had a mass and lump after surgery and what did the surgeon do.

Shalimar630

Joann, I'm sorry you have to deal with this. I haven't heard of anything similar and I'm on several sites. A lot of people are finding lumps at their surgical sites and they are just related to that. This sounds odd if they are not willing to investigate it further. It's just cruel to make you wait. I also had a lumpectomy and finished radiation Jan of 2014. My breast is also still really sore. I am assuming this is the norm, but I have an appt with my BS the end of this month and will be asking to make sure. Please keep us updated.

joannaraku

Thanks for replying Shalimar630, I will find out on the 19th. They put me on Buspar for my anxiety and that is helping a lot.

Shalimar630

How is everyone doing? I think I'm doing pretty good, (knock on wood). Saw my RO a couple months ago. I still pretty tender, she said I have fibrocystic? breasts and that contributes to tenderness.

Checking in...

jbdayton

So sorry you are still having pain. I am fortunate my skin came through great only a slight tan under my arm. Of course I don't have my original breasts anymore I had bilateral mastectomies.

I hope the pain eases with time. I am upto annual mammo with ultrasound. I am still being monitored because my tumor was against my chest wall.

I hope everyone else has progressed with little or no lingering issues. Hard to believe over 2 years have passed.

I actually am just finishing up with reconstruction (7 surgeries due to complications). I got my nipples in December and saw my PS Wednesday and he is scheduling my 3D tattoos. So ready to finish.

My husband surprised me with a cruise to celebrate we leave out of Houston Saturday for 7 days.

Anyone in the path of the winter Storms stay safe and warm

MaineRottweilers

It is mind boggling that it's been more than two years. I still have a mild tan line but it is fading. I still get contracting/burning/tingling at the chest wall but it is very manageable and never lasts long. I have had to have additional radiation (exactly two years later) to my L2 vertebra for metastasis.It was only five zaps and the worst effect was diarrhea and mild nausea which only lasted the week after treatment. I hope everyone else is doing well and suffers no long term effects from radiation therapy.

MsPharoah

Shalimar, fibrocystic breasts can definitely cause tenderness. But the radiation effects do linger and the breast tissue continues to change for a very long time. I definitely have breast tenderness and what I call "zingers" even after 2 years but I don't think mine is associated with fibrocystic breasts.

jbdayton, sounds like a lovely cruise with your hubby. Enjoy it. I don't think people realize how lengthy the reconstruction process is. I wish you well and most of all that you will be finished.

I have moved back to the midwest to be near family. I was planning to retire, but decided to telecommute and it has actually worked out well. I like this lifestyle and it gives me a better transition into retirement as well as allowing me to continue to fund my retirement savings. I also am able to attend family functions and get to see my two grandsons regularly, plus we are closer to my son and his family in Chicago. I have a new medical team. I've been doing well, so no complaints. I am now on annual mammograms, always followed by an ultrasound. My bone density is holding up and I have relatively few side effects with the AI's. I definitely spend more time NOT thinking about cancer these days.

It is always good to hear from the radiant ladies and hope all are doing well!

MsP.

L2girl

hi everyone.

I was surprised and happy to see this thread come alive again. It feels like a sort of class reunion!

I also still have tenderness under my arms, and of course in the breasts where the scars are. My MO said the area under the arms is part of the chest wall, and likely pain from rads under there for the lymph nodes.

I also have several chronic pain issues, and fibromyalgia, so that doesn't help things. But I've been doing yoga, which is helping and I really enjoy it.

Last week was my every 3 mos. checkup with my MO, and yesterday was my 1 year checkup with my BS. I asked if it was normal to have pain this long, more than two years. He said yes, and it could always be there. Luckily it is mild, just tenderness.

But other than that, both doctors said I am doing fine. I just had my breast MRI, too and everything was good.

Glad to hear how others are doing

Kruise

hi everyone

I am doing ok too on the bc front.

Tamoxifen has caused some uterus issues though - just had a biopsy on the lining yesterday, as its 1cm thicker than it should be, so waiting for those results to come back in a few days.

I still have trouble carrying excess weight too. But besides all that - I'm happy and well!

Good to see you are all doing ok

KBeee

It's been a while since we've all finished. Just wondering how all of our fall gals are doing. I had a LOT of shoulder blade pain for a month, but it has since faded. The only reason I did not freak out is because a local friend who went through the same rads protocol as me a few months earlier had the same thing, and I remember it vividly. She went through all kids of testing, scans, etc. It appeared almost to the day that hers did and also lasted about a month. My rads side is much tighter now and my range of motion is decreased slightly, but not enough to bother anything or hinder me in any way. My implant feels like a TE, but if I stay cancer free, it's all worth it. I pretty much am healed, back to my normal work schedule, exercising again, and am glad to have the burn fest in my rear view mirror. I have my follow up in May, but honestly would prefer to skip it. I don't ever want to step foot in there again!!!!! I won't skip it though. I do think the follow ups are important.

Kruise

Hi ladies

How are you all doing? Can you believe we are in November already. The year has zoomed by. I was just looking at some old posts and saw this thread so thought i'd stop in to say Hi again if any of you are still following it too.

On 11.11 it will be three years since I had my last radiation treatment. 2013! What a year..

L2girl

hi, kruise

Nice to hear from you again. The end of this month will be three years for me as well.

So far I'm still doing well, although my mom recently went through treatment for breast cancer. And another one of my aunts was also just diagnosed. (That makes four of my mom's sisters that have had BC now).

I still keep this thread in my favorites just in case anyone ever checks in

Kruise

Hi L2girl...sad to hear about your Mum. Wow there is definitely some type of family link there - I wonder if they have progressed any more on genetic testing to know exactly what it is? Glad to hear you are doing well too.

Yes I still have the link on my favourites as well.

I had to go in for a hysterscopy D&C because my uterus lining was way thicker than it was supposed to be (thanks tamoxifen). Luckily all ok. Will have to do another scan next year.

I'm still struggling to lose the weight I put on during treatment etc - my biggest moan! Lol. But hey if that's all there is then that's not bad.

What follow up etc do you get now? Mine is still 6 monthly but I think it will change to annually soon.