September 2010 Rads

maranatha

DMS -  Yeah, underwire bras don't work out well for you.  Get a really soft bra.  I also got a sports bra and wear it alot at night while I sleep because my breast still hurt.  Couldn't lie on that side.  After I got home I spent some days wearing no bra at all, just a summer top.  My breast was very tender with the peeling going on and I needed to keep it well moisterized with lotions and the bra would rub some of that off so I wore no bra.  Husband loved that!

CT124

Good Morning,

I am new to your group and will have my planning day Sept. 15th but will not begin radiation until about 2 weeks later. I have popped into the other chats as I have gone through this journey and have found them to be some of the best tips I could find anywhere and some of the best support.

melbello: It sounds as though you and I have a lot of similarities. I have expanders in after having a bilat mastectomy. Started chemo 4 weeks after surgery, TC (will have tamox. after rad), and originally med. onc. told me prob no radiation but to see rad. onc anyway. So ab 2 weeks ago found out that radiation is recommended which really blew me away, but this too shall pass. I ended up having a terrible time w chemo-keep wiping out my white cells no matter what they do and wound up in hospital for 6 days after first rnd w neutropenic fever. Port got infected after round 2, so am hoping my last round goes better than my 1st and after chemo radiation will be "easier". I am concerned about radiation w expanders and still one more round of surg to go, but the docs don't seem to be.

I look forward to talking w all of you through this process. You are incredible!!

Deb

sespebadger

Hi everyone,

Although I actually started radiation in August, most of my treatments will be in September, so I'd like to join your group. Today I had treatment #10 of 33. My last treatment is on the day after my 50th birthday. The only thing I notice so far is feeling a bit tired by the Friday of each of these first two weeks, and a little pinkness on the side they are radiating, but nothing painful yet.

The nurse told me people usually don't start feeling many side effects before treatment #20. She also said that the side effects continue for 2 to 3 weeks after treatment and can even get a bit worse during that after period. She said the side effects were skin burn, electrical twinges and fatigue. She gave me a tube of Natural Care Gel, made by Bard, which is an aloe gel. I'm to use it 2 times a day and never closer than 3 hours before a treatment, so I use it right after treament and before bed. She also gave me samples of Udderly Smooth which she says can be really soothing later on. I haven't tried it yet. She also said if I feel pain I can use Aleve or Motrin or Advil as they are good for pain and inflamation. And if I need more help I can call them whenever.

My simulation appointment with CT scan was a bit long and my arms ached from keeping them still and over my head. The actual treatment is pretty fast. The radiation is very carefully aimed. In my case they move the machine to 3 differnet positions to shoot from different angles. I was told that the number of sessions they plan for you depends on where the cancer is or was and how big we are.

I had a BMX with no recon. I find that a Champion sports bra (from Target) holds my micro-bead forms (from TLC) comfortably and has a soft band around my ribs that doesn't bother my skin so far. The bra has skinny straps and looks like a cute tank if it shows under whatever top I am wearing. Most mastectomy bras look to big and heavy to me. 

Just like every other part of this process (surgery, chemo, more surgery), I did not look forward to this radiation step one bit. But, so far, it's O.K. I really didn't like hearing that it was so much easier than chemo....from people who had never had radiation or chemo. I like to hear from someone who has actually been there.....

Good luck to everyone!

 

     

Dawn46

Hello everyone!

I have just finished my last TC treatment 9/2 and have my 1st appt with radiologist 9/10. I would love to join this group. I had aquired so much information from the July 2010 chemo group and would like to continue with this learning process.

fayebu

Hi Everyone

This is my first post even though I have been  reading and learning for the last month. Thank you all ! I was diagnosed with ILC in July, Had a lumpectomy in August , found out my Oncotype score today ( 16) . My oncologist feels chemo is not needed so I  will see my radiologist  on  Sept 21.  My oncologist  did order a CT scan  of my chest  and lungs and an ultra sound of my  abdomen and pelvic area.   Has anyone else had these tests before starting radiation?

LisaSec

Hello Ladies!

I went in for my simulation today and was told they could not do it because I have an area that became infected after my bmx and the wound has not completely healed.  I will go back on 9/10 for a "skin check" and if everything is good they will do my simulation at that time.  Then they will start my rads on 9/17.  I understand why they want to wait, but the delay is frustrating.

Love & Hugs to you all!

Lisa

DMS

Thanks Dutchgirl6 for the bra recommendation and I love your user name.  My son lived in the Netherlands for a year.

DMS

Haha, I've been going braless too.  My husband loves it but need to remind him not to touch.

rcca

Hi everyone. I appreciate all of you sharing your rad experience, as it helps keep me sane.

I will have 16 treatments plus 5 boosts. My second treatment was today. It was really fast. My lumpectomy scar has already turned pink and my breast feels slightly sunburned (but no redness). I will keep moisturizing and hope for the best. Wishing all of you starting next week the best.

DebbieLynn

Hi everyone , Thanks for sharing ! It really helps with questions to ask. I see the rad onco for the first time this coming Wed Sept 8th. this site has been so very helpful with post op. instructions that where not given after surgery . Someone dropped the ball with me . I still have not had a Ct PET or MIR scan , not to sure whats going on with that. I asked the Med Onco. about it , he said I didn't need one .  I don't like that at all and will mention it on my appt. with the Rad. Onco. Well Thanks for listening . Debbie

BocaCiegaBabe

I'll jump in with both feet here.  Been reading since June, but this is my first post.  Lumpectomy June 23, developed an infection following, and am just now beginning radiation--started Sept 1 and will have 33.  I envy you gals in Canada!!

I had been calm approaching this, so was surprised that just the sight of the linear accelerator freaked me out a bit.  The soft buzz seems to be coming from somewhere other than the machine, which was silent, and it gave me a strange feeling of apprehension I couldn't quite put my finger on.  My daughter sent a sweet email, which I now think of at each treatment:  "I just picture that machine sending life saving rays at my Mom, just like Superman, so I LOVE that machine".  I like the fire hose analogy too!   I'm calming down now.

bubbalu, I'm close to your age too, and have been in the sun all my life, starting with lifeguarding as a teen, and continuing on through living in FL and having a sailboat there, which we still get to as often as possible.  I've got lots of sun damage, but so far anyway, no reaction to the radiation after 3 tx.  I hope they can get that stopped for you so you can get on with this!  Like you rcca, I was thinking today my scar looked redder than it had.

Radiation oncologist gave me "Medline Remedy skin repair cream"  to use 3X/day, but no closer than 4 hrs before a tx.  It's nice and soothing.

My best to all of you as you start. We all are so looking forward to getting this over with! 

PS  Isn't this website fantastic?!

dutchgirl6

Wow, so many new names to add to the list.  Welcome to all of you.

LisaSec, how did your simulation go?  I'm sure that we all can relate to your comment about being one step closer to this all being behind you.  You're almost there!

Hi there Shelleyj43, cute puppy!.  Any word yet on whether or not you will be getting the Canadian protocol?  Since you had the FEC chemo, which is more common here, it stands to reason that your rads would follow that pattern.  I guess that you will have a better idea next week.

MelBell07, I'm sure that you are glad to have started this week, it puts you closer to the finish line.  I hope that you have minimal skin problems, so that you can have your reconstructive surgery as planned.  I agree about the tattoos, when mine were done, I asked "was that it?" 

dutchgirl6

I had to break this message up to pick my daughter up from work.  So, here is Part 2 of my welcome to the new members.

CT124, wow, it sounds like you had a rough time of it through chemo.  Did I read that you still have one cycle left to go?  Good luck, I hope that it goes more smoothly than your last ones.  Like you, I did a lot of reading on these boards before I joined, and I am so glad that I did, I learned so much.  

sespebadger, thanks for sharing your experience.  You gave us lots of good information.  And just think you are one third of the way through, wow!   What a way to celebrate your 50th birthday.  Although finishing so soon after will give you another reason to celebrate.

Hi Dawn46, good idea to learn as much as you can before you start.  And who better to learn from than those who are going through it or have finished.  

Fayebu, you must have been pleased to be able to "pass"on chemo.  From what I understant, CT scans are a regular part of the planning for rads, but I don't know about the other tests.  I do know that I had a chest x-ray and MRI after being diagnosed, maybe your onc just wants to be sure that everything is fine before your treatment.  

DebbieLyn, How are you feeling, it looks like it's only been a little while since your surgery.  I'm glad that you were able to find answers to your questions from this site, but it is a shame that your medical team didn't give you any instructions.  Not everyone has an MRI or PET scan, but after meeting with your rad onc I am sure that you will have a CT scan.  

BocaCiegaBabe, Canada's a pretty great place, and not just because of our shorter rad protocol!  Your daughter gave you a wonderfully strong image to hold on to during treatment, it sounds like she LOVES her mom too.  I also had an post op infection after my lumpectomy, developed an allergy to the antibiotic and then got C Difficile from the same antibiotic, not fun.  My chemo and rads were delayed for six weeks because of that.  Oh well.  Each day gets me closer to the finish line now. 

You are right, this website is fantastic.  So are all the wonderful members who share their lives and experiences with the rest of us.  Thanks everyone!

 

dutchgirl6

LisaSec, that sucks!  I hope that your wound and heals and your infection clears up so that you can get back on schedule.  Sept. 17 is a lucky day, it's my anniversary. 27 years and my husband still hasn't figured out how to change the toilet paper roll, grr.  But, that is a topic for a different board, I think .

DMS, thanks.  I was born in Holland, but I came here when I was 2, so I really consider myself Canadian.  But, it's also good to keep in touch with one's roots.  Where did you son live while he was there?  

rcca, two down, yay.  I hope that your moisturizing does the trick. You now have three days off to heal.  Gotta love those long weekends!  Thanks for the good wishes, I start on Tuesday.

jsmiley60

wow! hi to all the newbies!

I'm feeling more anxious about the radiation every day. It's not the treatment itself I'm worried about - it is the side effects. The doc said it won't be as bad as chemo, but chemo was pretty bad for me! Lol! I feel like I have been fatigued for almost a year now, so really don't want any more of that! Sigh.

Glad there are so many on this thread - it will be great that we can all support each other!

bubbalu

When I was going thru chemo I used some visualization tapes transferred to my Ipod (gift from my grandson to get thru chemo).  They were Beth Napersun and really good and calming, almost hypnotic.  They helped me accept the chemo into my body instead of fighting it and relaxed me enough to get thru each treatment.  Having a chest port made the treatments faster and smoother too.  I sometimes would visualize that the chemo was 'pacman' seeking out the cancer cells and killing them, washing them out of my body.  If anyone's interested in the tapes I can probably find the website again.  At least radiation is faster than chemo, perhaps we could use the same visualization techniques.

My PCP (whom I love dearly) called me back today and said I'm doing exactly the right thing by getting a second opinion from another radiation oncologist about this neck/chest burn that's OUTSIDE the radiation area.  He also said to be honest with my present onc telling him that I'm getting the 2nd opinion, he would appreciate my honesty. 

Are any of you lucky enough to be using the Varian RapidArc equipment for your radiation treatments?  Cutting edge technology, no one around here has it yet and UPMC is state of the art.  It's a new type of linear machine that zaps in 2 minutes and circulates around you on the table.  More precise and protects more healthy tissue.

Have a wonderful long weekend warriors..............

bubbalu

P.S.  Couple good book recommendations:  Just Get Me Through This, Breast Cancer for Dummies, Chemotherapy and Radiation for Dummies.

Malady

I have 5 treatments in and I have had  slight nausea and my skin is just a light pink other than that I am fine.   The worst part is the one hour drive to get there.  I put Libriderm on several times a day but  make sure I don't use it up to 4 hours before treatment.

jsmiley60

Bubbalu: I too imagined the chemo as pacman's eating all the cancer cells in my body! It helped!

DMS

Dutchgirl6 - My son lived in Texel for a year, it's an island in NW of the mainland.  We went to Maritime Canada in August, between surgery and radiation.  Loved it.

Joni57

hello,  I am on week 3 of my radiation.  Does anyone know if you can have spotting during radiation?

I've been with out any periods for almost 3 years.  

sespebadger

Hi joni57,

I've never read that spotting could occur due to radiation to the breast area. I'd call your oncologist and also talk to the people administering the radiation. 

I hope you find out what is happening.

dutchgirl6

DMS, what a lovely place to spend a year, were you able to visit him there?  My knowledge of the geography of the country is so poor, that when one of my aunts told me she went on holiday to Ameland, which is north of Texel, I didn't even know that there were islands off the coast of Holland!  But I looked it up (thanks Google) and it is beautiful.  What part of the Maritimes did you visit?  I lived in Nova Scotia before heading west.

joni57, are you on Tamoxifen?  Apparently endometrial thickening is one of the possible side effects, and that could lead to spotting.  My friend has been on Tamox for almost a year, and had a wicked period, the first time since she was on chemo over a year ago.  I think that you should definitely tell your oncologist.

dutchgirl6

Hi joni57, welcome to the group.  How many more treatments will you be having?

(Sorry I missed this, I thought that I was on another board, thank you chemo brain )

CT124

dutchgirl6: Thank you for your words of welcome.  Chemo was tough,one more to go on the 9th and then 4 weeks later on to radiation. It was so nice to hear you talking ab your husband of 27 years. It will be 27 for me this year, howevr with all of this mine has decided the best option is divorce. So will finish chemo, radiation and then deal with that process. Who knew the journey I would be on.

jsmiley: I couldn't agree with you more. Chemo was tough and just when you start to feel "normal" again, it hits you all over. I am also worried about the effects of radiation. Everything that could happen during chemo did. Maybe since chemo was so tough, we will have a better or easier (probably not the best words) time w radiation.

Thank you all for sharing your experiences. It makes it so much more managable for me knowing that we can get through this. Since this whole process started, I feel as though I have been on a treadmill with little control over everything. You are all incredible.

Deb

jsmiley60

CT124: I'm sorry that your husband wants a divorce after all you have been through!! Some men just can't handle breast cancer I guess. I hope you are right that the rads will be easier on us than the chemo was. You are in my prayers!

dutchgirl6

CT124, I'm sorry that you have yet another stressful situation to deal with, on top of the BC and your treatments.  As you said, you have been on a journey, and seem to be facing a few bumps in the road.  We often don't know how strong we are until we have to be, and I wish you strength.  Take care.   

DMS

Dutchgirl6, Yes, we did visit him in Texel and it was lovely.  We also went to Amsterdam.  We just came back from Novia Scotia, PEI, and NB.  Loved it.  Previously visited BC and Alberta.  The Canadian Rockies take my breath away.  Since today is Labor Day, it was nice to sleep in and not have to get up early for my Rads.  Back to the routine tomorrow.

DMS

NKrun- I was prescribed XClair cream also and it is pricey, $60 for a 3 tubes.  My Doctor gave me a sample that came with a rebate offer, fill out the form and get up to $30 back.  I can't answer most of the questions until I get further into my treatment but am hoping to recovery some of the money.  I don't know if the cream is worth it since I l only started treatment last week and no symptoms yet.

SharonNM

yippeee!  I just went on the internet - and the oncology group that is doing my radiation therapy has Varian RapidArc!   In fact - of all providers in New Mexico - they seem to have the most  advanced equipment.  (not even the medical school here seems to have this much technology.)

This group was highly recommended by both my oncologist and surgeon - I do think that once you feel like you have a good doc - they will only make recommendations to other good docs.  If you get two recommendations to the same doc - you probably have a winner.  Now I am looking forward to my first appt (probably simulation) tomorrow to see this eq.  Thanks for the info.

I am probably more hung-up on technology then I should be.  I have this nagging feeling that I would have been diagnosed earlier if the radiology group I go to had digital mammography earlier.