Radiation recovery
Comments
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Hi ladies just popping in for a quick minute here --- sending all my best to those whom I don't address directly!
Lemon -- hi! Sorry I've been a stranger. Just wanted to also suggest using a cold wet washcloth as a compress on your hot skin. I know you're doing an accelerated course, so it makes sense you're already feeling the heat, so to speak! I noticed about halfway through my course that on Saturdays the "burn" presented itself strongest. As if the five consecutive days came raging out on the day of rest. Thankfully it would calm down by Monday. Believe me when I tell you that once you stopped getting zapped, the skin does quiet down pretty quickly. At least that was my experience, and I hope it's common for everyone.
macatacmv -- hi from a fellow Mass-hole! ;-). Lucky you, to live on the Vineyard! (I'm in metro Boston myself.) I'm thinking you had to have gone off island for your treatments, right?0 -
Hi Joan,
No, I have never been to a pulmonologist. Nobody ever told me I have emphysema, and I don't have any symptpms of it. I had a ct scan 1 year ago that was fine, and a chest x-ray 6 months ago that was fine. I spoke to my doctor through email last night, and told him I refuse to have it done at this hospital. I don't mind an overnight stay, but not at this hospital. There is an imaging place that he is going to call and see if they require an overnight stay. To be honest I am not understanding why a pulmonologist from St Johns can't do it. I am hoping I will find out where and when soon. Thanks so much for your support Huga, Kate
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Sending support to Kate and everyone else who needs it.
For those who asked about swelling - I experienced quite a bit of it, and while it has gone down a little at 3.5 weeks, the radiated side is still considerably larger than the other one - I see my RO for a follow-up next week, so will discuss it with him, but I have been told it can last up to a year or so. On the plus side though, most of the tenderness that initially accompanied it has gone, so while huge, it isn't particularly painful.
As for the boosts and SE's - they didn't affect the fatigue one way or another - that held constant, but for me at least, the swelling did get worse (to the point where the last day the tattoos were no longer accurate because of the changes) and skin wise I never really got more than a tiny bit pink through regular rads, I did get a mild "sunburn" in the exact shape of the boost area - that's actually what they used to line things up that last day when the tattoos failed, LOL. The way it was explained to me was that the boosts don't penetrate as deeply so are more likely to affect the skin, but in a more concentrated area, so the rest of the breast escapes the effects. It wasn't bad though, and at 3.5 weeks out you can't really tell anything was done to my skin.
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kate - My apologies if it seemed like I was pushing UCLA.
Just looked at my note to you. Definitely am not. I am new to your experience with them. I was just lucky it seems because they were good with my stuff but have no idea what you encountered. Hopefully you can find someone at your hospital and not have to stay overnight.0 -
Hi Macatacmv,
I am sorry you are going to miss Janis' cake balls, but I am sure she will make more when your mouth feels better. Sorry that you had to have a tooth pulled. I don't think I have emphysema or copd either, especially with zero symptoms of it. Thanks so much for your support. Hugs, Kate
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Good morning April,
I am in your pocket this morning too. I was the one who asked if your mother named you April because you were born in April. I hope that after you have the ct scan, tatooing and simulation you will think that it is a cake walk too. As for me staying at THAT hospital overnight for my lung biopsy I refuse to do it. I emailed my doctor last night and told him to find out if an imaging place near me can do it without an overnight stay, or if UCLA Westwood would do it without an overnight stay, of if he could find a pulmonologist from St, John's hospital to do it. I would be willing to stay at St. Johns overnight. He will have to semd an order and scan to the new place, so it looks like I will be in limbo till this gets set up somewhere else. Good luck today Hugs, Kate
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Hi Bunkie,
I am sorry that you had to have lung stuff done too. UCLA Westwood is a little far for me, and I despise UCLA Santa Monica. I love St. Johns in Santa Monica. I told my doctor that I refuse to have it at UCLA Santa Monica, with an overnight stay. As I mentioned in a previous message, on the board, my doctor is going to check an imaging place in Santa Monica and see if they will do it, without an overnight stay., if not can he find a pulmonologist from St. Johns or worst case to find out if UCLA Westwood will do it without an overnight stay. I don't mind staying overnight, but only at St. Johns. Your lung biopsy was a more serious procedure than mine. Mine is just a ct scan guided needle biopsy. Online it says the whole procedure is usually done as an outpatient, and that you have to be at the hospital approximately 4 hours. So now I wait to find out where else my doctor can set this up. Thanks so much for your support Hugs, kate
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Hi Bunkie,
You most certainly don't need to apologize I know you meant well. I also know that everyone's experiences are different. I really have not had a terrible experience with UCLA. I went to UCLA Santa Monica for "the mammo" that discovered I may have breast cancer, and I just didn't care for the radiologist or the facility, so after that I had everything done at St. Johns. UCLA is a large teaching hospital, and I prefer the privacy at St Johns. Everyone's taste is different. You had a good experience there, but it is not for me. St Johns is much different than when you lived here. They tore down the old facility, and now they have a bigger, beautiful facility with all private rooms. I had a breast implant infection last year, and stayed there for two weeks, and I was treated like a queen. xoxo, Kate
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I do have to chuckle when I see some of you ladies talking about choosing between this facility and that one, getting 2nd, 3rd, and even 4th opinions.I live in a city of about 65,000 people and am lucky that our regional cancer center is 10 minutes from my work. I saw the surgeon that was recommended for me because she does most of the breast cancer cases, ditto for the oncologists. If, say I didn't care for my MO, I could see his partner or I could go 350 miles to the only other place that's "in network" for me. Ladies who don't live in town sometimes travel 4 or 5 hours, each way, for radiation treatment at our center, or face the prospect of being away from home for the 6 weeks it takes. They are doing some of the mamosite rads that take a week or so.. a real boon for those who qualify for such treatment.
I'm certainly not saying you shouldn't look at all reasonable options, but I will say that in some ways I think I had less stress. All the doctors I deal with deal with each other often and well, I didn't have to fret about which facility to choose, it was all... "they do that test at..." or "You are seeing Dr. R? She's great, you couldn't be in better hands"
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Hi Cindy,
I am sorry if I sounded insensitive to bc sisters who live in small towns. I live in Santa Monica, Ca so Los Angeles, and there are many options here. I am stressed about nodules in my lungs, and a bladder tumor, so not being able to get the biopsy done at the place I would like to have it is not comforting. There are so many hospitals in Los Angeles, and I want to be at one of the best. I don't think advocating for myself is stressful. The tumors are stressful. On the plus side I have a fabulous MO and he just emailed to tell me he sent my ct scan to an imaging place 4 blocks from where I live to see if they will do my lung biopsy as an outpatient. He is hoping to hear back from them today. I know you meant well. everyone thinks differently, and I just want to let you know how I feel. Hugs, Kate
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Not at all Kate. It just interesting, how similar some things are and how different at the same time. I understand you are going through a lot right now and how urgent finding just the right doctors can be... just amuses me that I'm not in a position to "fire" a doctor or center, just because this doctor or place doesn't suit me, and yet I feel like my treatment has been excellent even if Dr Soandso IS a turkey.
I suspect that most of us DO get excellent care, even if going accross the street or state would be more to our liking. It's reassuring really.
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Hi Cindy,
I am glad that you can get excellent treatment in your small town. I love small towns because the people are the friendliest. xoxo, Kate
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Hi y'all
Wow, busy thread.
April or may we call you Joyce - Pocket party with golden jelly beans in honor of your seeding today! Fingers & Toes crossed (((hugs)))
Josie - Darn not that nurse again:(...and snow too! Hope your nipple settles down and your skin is okay. After I read your post I took my jar of aquaphor and just dipped my whole breast in it like icing a cup cake...lol...every morning I tentatively pull down my camisole to peer at leftie to see if she's still there so far just tan... Sending cool healing restorative thoughts to you:)
Mac - Headed to store for some gel products...cool idea:)
Kate - We're here in your pocket...wiggle wiggle giggle giggle
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Deyla - Hope skin and infection are both better...take good care of yourself.
Bunkie - Warming up your pocket for next weeks biopsy:)
Adagio - Hope the swelling has gone down...and breast is not so tender...or glowing!
Joan - Thanks for helping us keep things in perspective ... Great encouragement.
Come join me on the Spring 2013 Rads thread...since Spring is here and my rads just started...love the promise of Springtime - lazy summertime days:)) cancer free!
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Kate - Wow they have changed. I was actually at UCLA Westwood when I did my stuff and only went to Santa Monica for a consult. If I move back that way I will remember the newness you mentioned about St Johns. You are right a needle biopsy is a lot less than I went under for. My lung collapsed and that is why I had to stay but not uncommon for what I had. Glad yours is simple. UCLA reminds me of U of Mi here in Ann Arbor. Another teaching hospital. They are big and you sometimes feel like a number.
Well next time you take a stroll down Venice think of me and I will be checking to see what your tests show etc as you choose to share them.
I have that stinkin thyroid biopsy next Wed. I am sure it will be ok but like the rest of us the word biopsy makes me crazy. Just want it over and done with.
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Hi Bumkie,
I am going to Malibu and Venice for happy hours for my surgeon- friend's birthday April 19. I will think of you when I am in Venice. We go to a restaurant-bar right on the beach.
Good luck with your thyroid biopsy Wed. I will be in your pocket. It looks like my lung biopsy will be next week too, but I don't know what day yet.
Hugs,
Kate
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I have one word to say about this "seeding" thing they did today. OUCH!!!!!!! LOL..did not hurt at all when she did it except the pinch for the lidocaine. But, once that lidocaine wore off, damn, it hurts. My bra rubbed on it all afternoon at work (they put the seeds in surrounding the lumpectomy cavity and that means low enough for the bottom of my bra to rub on it) and now I am sitting here with a cooling gel thing on my breast. Thank goodness I had leftover percocet from the lumpies..lol
Bunkie, I am keeping you in my prayers for a benign outcome!
You too Kate! I hope you get your outpatient wishes!
RMlulu, thanks for the pocket party. It helped! I had cake and jelly beans..lol
Cindy, sometimes the choices are the hardest part of this whole thing! I am lucky. All of my doctors are under one roof at Yale which is a comprehensive BC center and an amazing teaching hospital (of course it is amazing, it is YALE!) and I NEVER feel like a number. Their customer service has been outstanding. Truly amazing. I love it there. I am so thankful!
Thanks to EVERYONE for being amazing on this thread. You are the best!
Heading out to the kitchen. DH just came home with Chinese so I don't have to cook...what a sweetie. I am so blessed. My hubby is the best!
Have a wonderful Easter if you celebrate and have a blessed Passover if that is your holiday and if no holiday, just enjoy your weekend. I am Greek Orthodox so my Easter is not until May this year! Usually they are about a week apart but this year it is very different. Anyway, my wonton soup is calling me!
Later gators!0 -
Hi April,
I am sorry you felt pain, but I am glad this procedure is over. Let us know when your simulation is so we can have another pocket party for you. Hugs, Kate
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Hey All!! Tomorrow is the last date with the radiation!! The RO was being wishy-washy in the beginning. 28 verus the 33. One week it was 28 then the next week was the five boosts(33). I felt like a slinky with the numbers. It went back to the 28 like he first said b/c the removal of the tissue expanders didn't leave the skin on the original tumor site. But it will be finished and I can start to heal. The area itself is an angry red as they call it and no matter what cream or gel, it just managed to get redder and a bit itchy. Now to get on with my "new" life w/o seeing medical staff every week. I still have to get the INR done for the amount of warifin and those numbers like to go up and down a lot. I am tired and have the two "demanding" grandsons in next week but it will be good to see them. I do read here but just don't write much. The breast surgeon said to give the skin a good year to heal(and the mind) before deciding on reconstruction. I am good with that. Kat
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April, so glad that first step is behind you. What amazes me most about the experiences we share is we are doing things that before dx we would never ever think we could tolerate. I am sorry you have residual discomfort. Sometimes things are just in the wrong place.
Has anyone told you yet you are worth your weight in gold?
Kate, I am very impressed that your MO is searching for that right place for you. I have never had a doc with whom I could email...it would be so easy sometimes.For my Passover friends...does the celebration continue for a few days? I do wish everyone happy holidays, the hope of spring time, good family times, and most of all health.
We have 2 Cindys now..gotta check the avatars :-D
I am awaiting a landscaper/excavator for my yardwork...DH shot down the first guy...
Edit - oops didn't sound right - Dh didn't shoot the guy, just the price!
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When I was in grade school there were 5 Cindy's in my class. Poor teacher!
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Congrats! Spiney on tomorrow being your last day. Enjoy your grandsons.
Joan I feel lucky that I am able to email my MO and just about every day I get emails back and for from my friend-breast reconstructio surgeon. She is a Godsend. She listens to me vent, calms my fears, helps me if I feel a symptom. She gives me free beauty creams, and sometimes we go to happy hour together. Our next will be April 19. Passover lasts all week.
Hugs,
Kate
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Thanks everyone for your tips and well wishes. I am feeling better today, burning but better mentally!
Congrats to those of you almost done with or done tomorrow with Rads, I have 7 more, 9 down!
April- sorry you have some pain today, glad you have your perks! Hope you enjoyed your dinner.
Kate- lots of prayers still coming your way. I am sorry you have had to wait so long but I know in the end being comfortable with who and what is happening means everything. I know your pockets are full but in honor of Easter I am sending PEEPS to all my peeps here.
muchlove- Lemon
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Just checking back in to catch up with everyone. Kate, I am sorry to hear that you are going through some challenges right now. What a disappointment to have to undergo more worry and testing. It occurs to me that all of this could be completely unrelated to your bc. I think that is a possibility. My mother was a bc survivor some years ago and when she had a CT done of her lungs they found many small nodules. They had her come back in two months and they scanned her again. Both times they had allowed her to wear the top she came in wearing. It suddenly occurred to her after the same nodules turned up the second time with no change that both times she had worn the same top that had dozens of tiny wooden beads sewn on. You would think the medical staff would have figured out not to have her wear that top during the scan. There can be lots of benign areas that develop in the lungs. If you have had no symptoms that says a lot about the extent of emphysema you have. Lots of ex-smokers have those kinds of changes. When doing a biopsy of the lungs they want to be sure you are OK and your lungs are fine before they send you home. Try to find some distraction and focus on things that make you feel good. I will keep in touch to see how things go for you. You will be in my thoughts.
Hi to my other rads sisters. Hope you have a great Easter. GiGi0 -
lemon68,
I am almost done with radiation. Next monday is my last day. I am also very red in my left breast and close to my underarm the skin is peeling. The scary part is that I need to start taking Tamoxifen next week. I am very scared of the side effects. Are you going to take Tamoxifen or are you planning to do something naturally?
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Hi Lemon,
I am glad you are feeling better and thanks for your support.
Hugs,
Kate
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I am having my lung biopsy this Tuesday 4/2 at 10:30 am as an outpatient. So, I am glad it is being done where and how I want it, but I am scared. I found out by voicemail, so I didn't get to find out certain details like how many hours I will be there. I will call tomorrow to get the details. Then I hope I don't think about it until Tuesday. I want to enjoy the weekend and Monday
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Hi Gigil,
I am So glad to hear from you. I was very sad to hear that you Mom passed away.
Unfortunately besides a lung biopsy I also need a bladder biopsy. A ct scan showed lung nodules. One as big as 17mm. Then I had a pet scan that showed a bladder mass. Thank goodness i am not experiencing any symptoms of any kind. My lung biopsy is Tuesday.
I am going to try and not think about this all weekend and Monday, and hopefully have fun.
It feels so good to have your support I remember how sweet you were to me when I was in the hospital with a breast implant infection.
xoxo,
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Kate, I am glad you have a plan that works for you.
Try not to dwell on the upcoming procedure...there are just some things we can't change. I assume you will go to sleep and when you awake it will be done...
I know it is a stressful test but you are facing it as you must...and as my signature says, courage isn't a decision to be strong, it's a response. And you are doing well, my dear sister. I have a sister candle in my house that I light for special people going through challenges that are out of our control...it is lit for you.0 -
Hi Joan,
The biopsy is done with local anesthesia, so unfortunately I won't be asleep, and that is why I am scared. Thank you so much for your support. Hugs, kate
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So happy that you have a plan in place Kate! Also glad that you got your outpatient wishes! My boss found out today that she has to have a lung biopsy too. Her doctor told her most of them are benign! Her mass was 15mm's. They saw something on a CT scan I think. Hers will be in the hospital but outpatient. Praying that all goes well for you.
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