Radiation vs. Mastectomy - Decisions, Decisions

NotAgain2015

Thanks 3monstmama, it does help!!

I just got back from my simulation and will start on Monday.  I have met 'the machine'.  Like my husband stressed to me I needed to stop vacillating and make a decision - whichever way.  That, and that 4 doctors (BS, PS, two Rad/Oncs all suggested radiation first.  So, in the end, that's what I'm going to do.  Its been a long road to this point - mentally and emotionally (even tho only 8 weeks - feels like a lifetime) and its not over yet!

To all who shared and will share here, thanks for listening, and allowing me to lose it, vent, express my fears and come out the other side!  All the opinions and experiences mean so much.

iodine

Sorry to take so long to get back to you gals and the questions: I gave a wrong impression if you thought I was unhappy with my decision to have a mast.  I have never questioned that decision.  I am also glad I had the sentinal node bx.  Really gave me some piece of mind about mets--as much as one can have, I guess.  Over time, I realized that I had my surgery too soon after dx.(that's what I wouldn't do again)  I had only a week to wrap my head around breast cancer, and being a take charge kinda gal, I went with it.  I believe that was a major error.  It took me a while post op  (and lots of support from the gals here) to finally get a handle on bc and how it was really affecting me. 

 I was also unhappy with my bs choosing a ps for my recon. One should choose her own ps--you will be together for a long while, so you need to trust and like the guy.   The ps and I Never saw eye to eye on anything and the outcome was very poor, tho I know the man to be a good surgeon.  I had my recon (expander and implant(75% silicone 25% saline)  redone by another ps after consulting 3 in different cities and finally found one I felt good about.  Great outcome.

Mast: I have to admit that I was suprised that I was in no more pain than I was.  I learned that the breast has fewer nerves than other body parts and other than a very unusual amout of brusing (from my arm pit to my thigh---weird!, but I was only off anti inflammatories for a couple of days pre op---another reason to NOT go for surgery so soon after diagnosis)  Everyone says the drains are a pain, but except for catching the tubing on a chair and walking away, LOL, I saw no real problems.  If you sleep in a recliner, they dont' get in the way as much as trying to sleep in a bed with them.  I looked at my scar in the hospital while under the good meds and so it wasn't a big shock when I got home.  What was weird was wearing t-shirts (tamox and hot flashes put me in t-shrits, year round, for 2 years) and no bra with a pad (used shoulder pads to fill out the bra)--was being one sided. 

Yes, there are many, many places where one can depend on good rads----it comes down to the tech who's giving the treatment.  As noted above, the rads onc doesn't need to be there once the markers are placed and treatment plan made.

nolookingback

I went with the mastectomy / no radiation. But only because the size of my DCIS (11cm) was so large that everyone I spoke with recommended MX over radiation. I'm 6 months out and fairly happy with the results. I had the flap and really didn't realize how much that would effect me. TIGHT abdomen, large areas of numbness, can't use my stomach muscles. I get better everyday of course and hope some of these problems may eventually resolve themselves. I go in for a "touch up" to even me out in two weeks. Since I had the flap/reconstruction done at the time of MX I was lucky and have never had that sense of loss, just thankful for an early diagnosis. But I am definately different than before. I would really suggest anyone be sure they really NEED a double mastectomy before going that route. It's nice to have at least one of my "originals" and feeling with it. But if my cancer would have been 2 or 3 cm instead of 11cm I would have gone for the lumpectomy. The "numbers" are so good with Lumpectomy/radiation I don't think the slight, if any, benefit is worth the "damage" of mastectomy. Whatever your choice - best of luck and try to put it in your "rear view mirror" as soon as you can.

jameson

I had dcis in one. multi focal.. recommended one mastectomy.  I was sooo terrified. i could not sleep.  i would jump out of my skin  when the phone rang.    I had stereotactic ... did not get clean margins.  then excisional surgical biopsy ... not clean margins.  I wanted control of this beast.  I had bilateral mastectomy and DIEP reconstruction... i am six weeks out...  i look far better ( with my clothes on than before. super flat tummy.  .... it was a tough recovery at times.  I am relieved i did it.  I honestly could not face any more... anyone that needs to talk please pm me i would love to help anyone sruggling or with questions or just needing someone to vent with. the reason i chose both was because i myself couldnt face it again....  no one even knows i had surgery.  i have my own skin, these are feeling softer everyday.. i can feel my armpits.  i llk like i did before kids.  i have 2 young children.   

jameson

The surgery and recovery was not as bad as my head had made it to be either.  I highly recommend looking at he PRMA website at their gallery for diep,  or implants reconstruction...  Wonderful doctors amazing mind boggling work just remarkable!!!!!!!

kcshreve

I had an excisional bx in Nov 09 without clean margins on rt breast.  Chose a bmx with immediate nipple sparing DIEP reconstruction for both breasts.  The pain and recuperation was not as bad as I had thought - less than my C sections. No regrets.  Personally, I was one who needed the security of the 1-3% recurrence rate for my own peace of mind.  I considered all sides, was confused for awhile, then as it settled, I began to get a sense of what I really needed to do.  It's very personal.  you do need to seek that place of peace and, fortunately with DCIS, you have a bit of wiggle room to spend some time with your heart to find out what is best for you.  BS and onc are stunned at the good results.  I do have no feeling in nipples, but other breast skin is sensitive.

mdwriter

I posted a long note on the DCIS discussion, so will just summarize. Thanks to swalters I consulted with Dr. Lagios after my lumpectomy and SNB. Based on my pathology, he recommended NO radiation and NO Tamoxifen or aromatase inhibitors. In discussion with doctors around the country it is clear that the options should not be binary for DCIS: mastectomy or lumpectomy with radiation and possible Tamoxifen or aromatase inhibitor.  However because the radiation oncologist association has developed guidelines that lump all DCIS into one group, even patients with low grade DCIS with wide clear margins and negative nodes are being told to have radiation. Read Dr. Mel Silverstein's articles and consider getting second opinions from Dr. Michael Lagios in San Francisco. He's terrific.  

sweatyspice

kickon2it - I'm sorry, I didn't see your question to me until now.  I had multicentric DCIS, one area was grade 3 w/comedonecrosis, the other was grade 2-3 w/no comedonecrosis.  Standard of care was mastectomy, which I did not want.  I had more extensive surgery than a lumpectomy, I had a bilateral lift & reduction - my DCIS happened to be located in areas which would need to be excised for a lift/reduction procedure anyway, so I was able to have that surgery (I'd never have done it w/o the DCIS, I was happy the way things were).  As I understand it, I made the tradeoff of keeping my breasts for a fairly high recurrence risk (b/c of my individual pathology) so I also opted for rads + Tamox.

My rad onc has said that she's radiated women twice, and I'm not sure that reconstruction on radiated skin is impossible.  I have a follow up app't with my PS on Weds, I'll ask.  Maybe implants aren't possible, but I think the flap surgeries are; and that's what I'd wanted to do anyway.  I'll ask on Weds, maybe I'm wrong.

NotAgain2015

Hi sweatyspice, good to hear from you.  I appreciate your asking your PS - I will be interested to hear what their opinion is. 

Reading your response mdwriter, you make a good point.  I have been out to their website, read their articles and took the test.  I wanted to lean in that direction - to not harm my body any further - but with my family history, I had too much nagging at me to stop at lumpectomy.

I had a 2nd opinion including having my pathology re-read, which was originally written up as <1 cm DCIS with over 5mm clear margins.  When the pathology slides were read at the teaching hospital, they came back and said I had ADH out to the margins.  But that technically they consider that 'clear margins' in that there was no DCIS or worse.  But.... ?? !!  That helped me feel better about moving on with radiation. 

I'm still iffy on tamoxifen because of the side effects.  But I feel like so far, every time the odds were in my favor, I had the losing card.

Bottom line, it is a personal decision that each of us has to make.  We each have a different set of circumstances to consider.  Even now when I have made my decision, there's always that little voice in the back of my mind saying - I wonder if it is enough...  only time will tell ...