January 2012 rads

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  • anne67
    anne67 Member Posts: 36
    edited January 2012

    Hi Everyone, just had my lumpectomy for DCIS on 12/30 and was told I will start radiation in about 3 weeks.  My mom had breast cancer at 48, colon cancer at 58 and a few incidences of skin cancer since then.  I knew cancer would find me one of these days but did not imagine that it would be at age 44. That said, I feel lucky that my cancer was caught so early.  My mom had a 50/50 chance of survival 23 years ago, and thanks to great doctors, very agressive chemo and an unwavering positive attitude she is in excellent health at age 68.

    Looking forward to getting advice and support from others who are going through this too! I am lucky in that I do not need chemo, but I will be starting tamoxifen, so if anyone has any advice for preparing for radiation or knows what side effects I can expect from tamoxifen, let me know.

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  • b0bbi
    b0bbi Member Posts: 6
    edited January 2012

    I am 62 years old. This is my first time dealing with anything remotely related to cancer. :-(

    I had a lumpectomy (left breast) on Dec. 21. Wednesday is an appointment with the Radiology Oncologist. I should say it was DCIS, intermediate grade, VERY small amount, less than 1 mm, very very tiny group of calcifications.

    They had to get a second opinion on the stereotactic biopsy they did. Came back malignant.

    My surgeon said he "got it all" (his words) and with "good clear margins" (his words). I am requesting and will probably go pick up tomorrow ALL my records from the surgeon's office, including the biopsy from the lumpectomy. I really feel I need to read all this myself.

    I am VERY VERY leery of this radiation thing I must admit. VERY.

    The anesthesiologist (just before the surgery) asked me if I'd ever had a heart attack. I said not that I was aware of, why? He said that the EKG shows what looks like I might have had a heart attack at some time. Say what??? UGH!

    I am greatly concerned about the possible (although rare they say...) damage to heart and lungs and that the ribs get weakened. I am not sure the possible risks of side effects outweigh the benefits of doing this. Supposedly left side, which mine is, can be a slightly greater risk.

    I smoked for 46 years, quit completely on October 29, but I am sure my lungs aren't the healthiest yet. Then there's the heart thing. And the ribs. Yikes!

    So, I guess I will ask her about all of this, but I'll tell you, I am really leaning toward NOT doing it (rads). Hubby feels pretty much the same way, although he will support me in whatever I decide to do.

    I am wondering if I should get a second opinion? Or just say no?!

    I sometimes feel that the status quo is what happens with these things. Like, "this is what we always do in these cases...."

    Anyone with similar fears etc, and how did you decide and deal with it?

    Thanks!

    Bobbi

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2012

    Hello

    Ossa, I am getting silicone implants.  I wasn't a candidate for the flap surgeries.  I think they all have pluses and minuses.  Of course with implants they are usually only good for about 10 years.  The flap surgeries I don't know a whole lot about, except longer surgery and healing time.  Some people love the "tummy tuck" idea! 

    Hi and welcome anne67.  I am sure you will get all kinds of support and answers here.  I am in same radiation boat and haven't started tamoxifen yet.  So I will just learn too!

    bObbi, I would think a second opinion would be a good idea.  I didn't have much choice, had positive nodes and ILC cells in every quadrant.  I am not sure if there are very many radiologist who will tell you not to do it, but a second opinion might make decision easier!

    Sara ♥

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  • hawk
    hawk Member Posts: 305
    edited January 2012

    Hi Anne - I am 44 as well.



    Has anyone who has already started using any special creams or oils? I have read recommendations for Emu oil a couple of time a day.



    For those above who are leary about rads, I have been considering getting a mastectomy rather than go through rad because I wouldn't need rad if I go that route. My BC's opinion is that I do not need to be that drastic but he will do it if I want. The decision making is the worst.

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  • Rockym
    Rockym Member Posts: 1,261
    edited January 2012

    I've heard a lot about Miaderm.  It is supposed to be non greasy and very comfortable to have on.  I hate any type of lotion on my skin and anything oily or greasy would make me miserable. I bought 2 tubes of Miaderm online a few weeks ago knowing rads was coming.  January 4th, Wednesday, is my first day and I'll start using it afterwards.  My RO said to use aloe 5x a day.  Miraderm has aloe in it.

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  • newksmom100
    newksmom100 Member Posts: 55
    edited January 2012
    Not much to add, but joining the January 2012 rads party!  Initial meeting with the oncologist on Thursday (Jan 5th).  Looking forward to that and hoping it will be the last piece to this puzzle so that I can finally see the whole picture. Smile  Same concerns as every else, fear of the unknown and suspect it will all be easier than I expect.  Seems like a long time ago now (7weeks today), but had trouble sleeping and eating before the biopsy and that ended up as being literally painless.  So glad I have you all to talk with. 
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  • Pokey65
    Pokey65 Member Posts: 16
    edited January 2012

    Happy 2012 Ladies, here's to getting through this and a better year.  

    I had a DMX, am half way through chemo, and they want me to sign up for radiation now. Egads!  I have tissue expanders and am really afraid of the radiation and contracture issues.  My oncotype score is low - 15 - but since I had positive SNL and premenopausal, chemo was indicated.  Interesting to listen to everyone, since I am half through with chemo, radiation is my fear!  I just want to be finished and move on!  Seems like the docs don't always agree ... I have seen three RO's, hoping one would say that I don't need it!

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  • Pokey65
    Pokey65 Member Posts: 16
    edited January 2012
    Hawk,  I did the DMX, thinking no chemo or rads, right?  Now with a SNL positive, I am in line for both!  Yikes.  The node came back negative in surgery and then the pathology 4 days after surgery showed microscopic in the SNL.  
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  • hawk
    hawk Member Posts: 305
    edited January 2012

    I'm so sorry to hear that Pokey65. Yikes is right.



    I had the lumpectomy thinking that I would have the easier surgery not knowing about chemo and rads. I'm still waiting for my onco score (11 more days to wait).

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  • anne67
    anne67 Member Posts: 36
    edited January 2012

    Hi Hawk,



    I see you are from the Western suburbs. I am from the Northwest suburbs of Chicago. Just out of curiosity, why would you consider having a mastectomy to avoid radiation? I would consider the mastectomy to get out of chemo but from what I've heard radiation is easier. I have not been to see a radiation oncologist yet since I just had my surgery 3 days ago, so I'm probably not aware of what all the side effects are at this point.

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  • Kate60
    Kate60 Member Posts: 597
    edited January 2012

    Hi Everyone. Wow, our group has grown so much since I last checked in. I've been in hospital for the past 5 days with a post operative infection to both breasts and today I went and saw my RO for the initial pre radiation consult.  I have been thrown a curve ball and so I may not be starting radiation this month as planned.

    It seems they have at last found out that I am triple positive, which includes HER2. So I now have to meet with a medical oncologist to discuss the posibility of Herceptin and Chemo. This was never something I was planning on and was never discussed as a possibility, so it's all gone a bit belly-up for me.

    So I may not join you all here in January, but I will pop in from time to time to see how you are all doing. Boy, by the time I get to have rads (which now mightn't be until the end of the year!) You'll be all done and dusted and all in a strong recovery with NED hopefully.

    Cheers

    Kate

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  • chef127
    chef127 Member Posts: 891
    edited January 2012

    Dear Kate,

    I'm sorry to hear of your set back. Was your infection cancer related or surgery related? Being er/pr+ is a good thing. Chemo does not work so much on positive breast cancer. Her2+ is another story. hercepton and hormone treatment is the likely course.

    Will you get the oncotype test? DO IT! That will be the determining facter to do chemo or not.  Please educate yourself on your status and your options. I feel the MO's over-diagnose BC. But do not listen to me so much. Learn as much as you can. My decision NOT to do chemo may be a mistake.

    My thoughts and Heart  are with you...........................Maureen

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  • hawk
    hawk Member Posts: 305
    edited January 2012

    Hi Anne67 -  I am waiting to see the results of my Oncotype test.  I guess I am feeling that if I have to do Chemo, then I don't want to do both Chemo AND Rads.  I definitely do not have to do rads if I do have a MX.  I grew up by O'Hare!

    Kate - I hope you are feelilng better after your infection and so sorry to hear that your pathology changed.  Prayers and hugs.

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  • Sharon1942
    Sharon1942 Member Posts: 272
    edited March 2014

    I need everyone's input as to when they began radiation - how many weeks after chemo.  I had chemotherapy & my chemo onc said I was to begin radiation in 3 weeks - after my body recovered.  In fact, I had a consultation with the radiation oncologist in Sept.  Well, I find out today that the rad onc is so busy with appts. & meetings that she cannot see me until Jan. 26 - 6 weeks after chemo!  I am afraid that the delay will let any stray cancer cells start metastisizing before they are radiated.  I expressed this fear to my chemo onc & the answer was to refer me to another rad onc.  This new rad onc received her onc degree in 2011 & I know the original rad onc is very experienced.  My mastectomy was on my left side, right over my heart, so I feel I need an experienced rad onc so that I don't have any life-threatening side effects.  SO, my question is, do you think it is okay to wait 6-7 weeks after chemo to begin radiation?????

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  • Rockym
    Rockym Member Posts: 1,261
    edited January 2012
    Sharon1942, I finished chemo on November 21 and I start rads tomorrow January 4.  This puts me at 6 weeks and a few days.  I asked the RO if she thought it was okay to not start at the 3 week mark as my kids were off school and there were a lot of holidays coming up.  I would have been starting and stopping for each of these days the facility was closed.  She said up to 6 weeks was fine.  There are even ladies who do chemo then have surgery and have to heal from surgery before they can get to rads.  That can sometimes be a couple of months.
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  • Ossa
    Ossa Member Posts: 919
    edited January 2012

    Sharon.

    I finished my Chemo Oct 18 then had surgery with tissue expander put in Nov.22 had my last fill today and will start Radiation Jan. 13 (moved up from Jan 20th).. Was told that in the long run it does not matter if you do surgery then radiation or radistion then surgery

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  • Lucille3361
    Lucille3361 Member Posts: 11
    edited January 2012

    Hi,

    I start radiation tomorrow, 1/4, and am very nervous. I hear it is easier than chemo..any advice about fatigue and burns?

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  • Lucille3361
    Lucille3361 Member Posts: 11
    edited January 2012

    Bobbi,

    I understand your reluctance to do radiation. I start tomorrow and I am very reluctant. My oncologist told me a tiny portion of my right lung will "die" from radiation. I feel if I don't do the radiation I will wonder "what if I had..."  You are right, it is the status quo. 

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  • Lucille3361
    Lucille3361 Member Posts: 11
    edited January 2012

    chef127,

    Hi, I had an oncotype test and my score came back high (31) so the Dr. recommended chemo to avoid recurrance. I was disappointed since I only had a lumpectomy, no node involvement, but it was 2.8 cm. All in all, chemo was not fun but it was doable. Gool luck.

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  • Rockym
    Rockym Member Posts: 1,261
    edited January 2012

    Lucille3361, I start tomorrow also.  I'm nervous because I've been following other rad groups who say rads is worse then chemo and a lot of them were surprised by it.  It seems that things start to get tough about 3 weeks in or so.  I don't want to scare anyone, but I haven't read too many posts about rads being an easy ride.  Maybe those who are doing well aren't posting.  Who knows.

    Wishing you luck for tomorrow and let's cross our fingers that all goes well.

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  • Ossa
    Ossa Member Posts: 919
    edited January 2012

    A friend of mine had rads in oct,, said it was easy compared to chemo,, lots of fatiuge towards the end.. Make sure you use LOTS of moisturizer.. 5=6 times a day..

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  • tnhelen
    tnhelen Member Posts: 63
    edited January 2012

    Bobbi and Lucille - I am on my 6th radiation treatment tomorrow.  I also had DCIS and had a lumpectomy, one reexcision to get clean margins and will have 33 radiation treatments with the last five being a boost. 

    I decided to go ahead with the radiation to do everything possible to keep this monster away.  I will also take tamoxifin for 5 years.  I am so lucky not to have to take chemo.

    The RO told me I would probably lose 3 percent of my lung capacity - it is on the right, but I probably won't notice a huge difference.  Also, the fatigue will probably set in about week 3.  I have had a pink breast ever since surgery so I know that it's not because of radiation yet....but RO is watching closely.  My nipple seems to be the sorest spot of all and the nurse said it is because it is higher so to keep cream on it.  The RO gave me some prescription cream but said not to use it before my rads. I have this picture of bacon frying if I use it before rads. 

    Helen

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  • J-Bug
    J-Bug Member Posts: 626
    edited January 2012

    Hi everyone! I have simulation on Monday the 9th, then start the real thing on Tuesday.

    Ralston: Good to see you again! You were in my July chemo group. I hope you are faring well through all this.

    So, for those asking, I did chemo July 1st - Oct 7th. I had a bmx with snb on 11-09. I feel like I have a great energy level going into this. Taxol was extremely rough for me with a lot of joint pain that is still continuing. However, I have been working hard with a PT to get through that and some rotator cuff issues from surgery. I started walking last week and it is making all the difference in the world! I refuse to worry about fatigue until I actually experience it. I have done enough worrying to last a lifetime! 

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  • Kayce234
    Kayce234 Member Posts: 249
    edited January 2012

    Well I thought I was going to be part of the February Rads group since my first appointment after surgery was set for 2/1/12 but got a call today "confirming" my appointment for tomorrow at 10:30am!  Luckily, I'm available tomorrow and can go to the appointment.  I'm a bit nervous - I've had my mind set on February and have been prepared for radiation to start then - now I'm a little freaked out that it is starting so quickly.  I'm curious what will happen tomorrow - the receptionist said it was a "re-evaluation" appointment moved up from 2/1/12 but my Dr. said the Feb appt was for mapping, etc.  Anything you can tell me about this first appointment would be appreciated!!  Thanks!

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  • chef127
    chef127 Member Posts: 891
    edited January 2012

    hello ladies,

    I went for my mapping appt. today. Started out with a CT scan. Then My breast was mapped w tape and marker, and then about 4 tatoo's. One of the tatoos is on my "good" breast so I guess they will radiate that area to get to the tumor site. Easy. I picked a appt. time and I chose the latest one I could which is 3:00pm. Gives me time to run all my errands before fatigue sets in. I'm thinking of that as a time for R&R.  I'm really nerveous, but I better do something. I elected not to do chemo and the hormone inhibitors are too invasive.

    Helen, I think the moisturizers inhibit the effects of the radiation. I'm not sure.but frying bacon while getting the rads could be a time saver. Killing 2 birds w/ one stone...

    Kayce, re-evaluation? Have you met with the RO already?

    Let the fireworks begin...........................Maureen

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  • Terry71
    Terry71 Member Posts: 293
    edited January 2012
    HI Ladies mind if I join this thread? I had my rad app today will be starting in 2 weeks and will have 5 weeks... Had ct scan today and my tattoo's done all is good, am 5 weeks post chemo, and 3 weeks post surgery Smile I was told today NO creams unless its Aloe Vera, I was advised to use johnsons baby powder or corn startch as they want to keep the skin DRY, not too sure if anone has heard that or not..... Hope everyone is well
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  • Ossa
    Ossa Member Posts: 919
    edited January 2012

    Welcome Terry

    Have heard the same about babypowder, but make sure you get the babypowder made of cornstarch NOT regular babypowder.. As for creams... anything unscented... \I prefer aloe myself

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  • Ralsper
    Ralsper Member Posts: 352
    edited January 2012

    Hello J-Bug! It's been a while since I have been on here because I just wanted to forget about it and enjoy as much as possible the holiday season.  I was emotionally exhausted! Unfortunately, my left upper arm is still "numb" and although I have been working with a PT, I am extremely concern that the radition will make it worse. I will begin counseling, while I am on radiation because I need help to move on with my life. Good luck to everyone that will start radiation!

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  • tnhelen
    tnhelen Member Posts: 63
    edited January 2012

    RAD #6 today and all is going well.  Breast is a little pinker but not worried about it yet.  Has positioning Xrays today also.  They want to make sure they are shooting the radiation to the correct area (nice, huh - they had better be! But would I really know?)

    Maureen, you made me laugh out loud.  Good point about the bacon.  Any shortcut is good!

    Helen

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  • J-Bug
    J-Bug Member Posts: 626
    edited January 2012

    Hi again Ralston. I was tempted to not respond to you as I shut down for the night. I have been working this evening with some online training to update skills while I am looking for new work. I would like to pretend that I am not so drawn to this site. It has been so helpful, but I am finding that I am not spending as much time being productive with my life and living it as I would like. That is awesome that you are doing counseling for that. I have thought about it as well, but have been very busy with many other appointments after bmx and now working with PT and my kids' special need appointments. I wish you the best with all of this!

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