Rads VS Mastectomy--please share RAD stories!

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Hi ladies,

This is my first post.  I don't know how to create a signature, but I'm Stage 2 HER2+ left breast & localized (no sign of any lymph involvement) and midway into neo-adjuvant chemotherapy (Taxotere, Herceptin, Carbo.) I'm 47-years-old, married with 2 perfect young boys.

My mid-chemo scan shows NO SIGN of my 4cm tumor.  Whoo hoo!

So I'm now facing the surgical options.  Either minimal lump & 40 rounds of RADS or BMX & no radiation.  (the Bilateral is my best option because I'm a DD & would need major work on my right breast in addition...) 

I am COMPLETELY CONFLICTED.

And since all of you are somewhere along the Rad process, I wondered if you can share some of your thoughts & feelings.  I have major anxiety about radiation--everything from chronic damage to pain and cosmetic issues.

I'd really appreciate anything you can share to help me make my decision.  My husband is making this very hard for me--long story but he is a survivor of advanced prostate cancer & has A LOT of fear when it comes to surgery.  Also, he likes my big boobs, let's face it.  (Me?  I've dreamed of being a C cup since I was 13...  Still, I like my big girls!)

Thank you!

Comments

  • Elizabeth1889
    Elizabeth1889 Member Posts: 1,036
    edited December 2012

    Hi LotusMama, First of all, congratulations on the tumor shrinkage. That is great news. Only you can make the decision of what is right for you. My tumor was in my left breast, too, so I worried about heart damage, but I had a lumpectomy and rads anyway. It was what my surgeon advised and I was too she'll shocked at the time to disagree with him. I hated rads although I had an easy time physically. The emotional aspect of rads was awful for me. If you had asked me immediately after rads about mastectomy vs lumpectomy, I would have suggested mastectomy. Now that the emotional scars have healed, I am glad I had a lumpectomy. Your tumor is aggressive. Please ask your doctors what surgery provides the best survival rate and then follow your instincts. Good luck.

  • BLinthedesert
    BLinthedesert Member Posts: 678
    edited December 2012

    Hi LotusMama -- I second the congrats on the chemo doing its job!

    Regarding radiation, I will respond that I had a relatively easy time with radiation, I completely agree about the emotional part of it ... it was hard going every day, especially feeling crappy near the end.  

    I was really one of the lucky ones, I ran all through treatment, I was pretty fatigued, but not too bad (worked through it all, just took a few 1/2 days at the end).  I did get pretty bad dermatitis (ichy, red, hot, oozy skin -- and I couldn't use any lotions on it because they all made it worse) - but this cleared up within about 2 weeks after completion of treatment.  Six months later, I am pretty much all healed up and feel all better.  You should read through some of the posts from our May 2012 group -- it gives you a pretty good snapshot of what it is like for a variety of people.  

    Best of luck in your continued treatment.

  • BilateralBeauties
    BilateralBeauties Member Posts: 149
    edited December 2012

    I had bilateral lumpectomies and bilateral radiation. My husband definately wanted to keep the playground around. My oncologist and surgeon encouraged the lumpectomies as life expectancy is the same. More can ALWAYS come off. I was 43. I'm an H or I cup. Lots of extra blessings there. Radiation was tough. I missed four weeks of work. The last two weeks of treatment and two weeks recovery. Having both sides done left me without a side to use for driving, etc. I had radiation related nausea, wet desquamation of about 12 inches x 2 inches on each breast. And I healed amazingly fast and would do it all again. As much as the process sucks - daily impact, that just keeps building, and all of the rest of the stuff. There's a lot of time left to enjoy life with my husband and having the option to stay whole was best for me. The biggest longterm cosmetic change came from surgery and for me is slight. I finished Feb. 25 and the girls are relatively pink and happy now.

  • rozem
    rozem Member Posts: 1,375
    edited December 2012

    i've had both, and an aggressive pathology like you

    i originally did a lump and rads bc i was told i would have rads anyway due to LVI, grade 3, her2 aspect of my tumor.  I live in Canada and they don't generally start reconstruction until AFTER rads so I decided to wait and do the bmsx later (just had the surgery 8 wks ago) so i could do recon at the same time

    RADS was pretty easy, honestly! i had the worst time during chemo but i found rads to be quite easy.  I didnt burn and the only major SE I had was being very very tired especially near the end of treatment. 

    BMSX - now this has been extremely tough for me, way way worse then the lump/rads.  I dont know what type of surgery you would consider but i was not a candidate for my own fat (DIEP,etc) so TE to implants was my only option.  I have had a terrible time with these TE's.  The surgery is a really tough one, for me anyway.  Some people seem to sail through the process but i am not one of them! Remember there are complications with any surgery and the re-coup time is considerably longer.  I bounced back from my lump in a few days.  9 wks later and Im still healing and i have another surgery in jan

    it was a personal decision to do the bmsx and only you can make a decision on what is right for you.  I just wanted to tell you my experiences with both

  • Downey30
    Downey30 Member Posts: 337
    edited December 2012

    Hi, I agree that only you can make the decision

    I started off with partial mastectomy, chemo, and radiation.  I wanted a bmsx at the beginning but my surgeon said no.  One year later I ended up with cells in the other breast and ended up doing the double. Three  implant surgeries followed with failure due to the rads.  I have now had three flap surgeries using hip and abdomen.  I guess my only regret is not doing what I wanted in the first place.....I could have avoided the radiation.  Mentally I had a big problem with it.  Also, my best advice is to know all of your options.  My first plastic surgeon at Duke recommended what HE could do.....not what was available.  Good luck with your decision.

  • Downey30
    Downey30 Member Posts: 337
    edited December 2012

    Hi, I agree that only you can make the decision

    I started off with partial mastectomy, chemo, and radiation.  I wanted a bmsx at the beginning but my surgeon said no.  One year later I ended up with cells in the other breast and ended up doing the double. Three  implant surgeries followed with failure due to the rads.  I have now had three flap surgeries using hip and abdomen.  I guess my only regret is not doing what I wanted in the first place.....I could have avoided the radiation.  Mentally I had a big problem with it.  Also, my best advice is to know all of your options.  My first plastic surgeon at Duke recommended what HE could do.....not what was available.  Good luck with your decision.

  • Timbek2
    Timbek2 Member Posts: 204
    edited December 2012

    Here's my two cents.  I desperately wanted the lumpectomy/radiation option.  My mom is a 16 year survivor with strong family history.  Had no lymph node involvement but aggressive cancer.  She did the lumpectomy/radiation and has never had a reoccurrrence.  Doing very well.  She was diagnosed at 49.

    Unfortunately for me, I had to do MX due to node involvement so I am getting the full work up.  Also I am "only" 40 so I went with the BMX with implants.  I am all about symmetry and am small breasted so I am actually a little fuller than before.   But I really hate not having nipples.  It bugs me the most.  I have little feeling in my chest and will live with this for the rest of my life.  It really makes me sad that my life has come to this, but I am alive and everyone tells me that is what counts.  

    It is such a personal decision.  One that will affect the rest of your life.  Praying for peace for you in this.  God bless!

    Becki

  • ruthbru
    ruthbru Member Posts: 57,235
    edited December 2012

    Radiation was a piece of cake for me compared to chemo. No problems then, no problems now. Glad I had and took that option.

  • Marcie47
    Marcie47 Member Posts: 248
    edited December 2012

    Rads was very difficult for me, in fact harder than the chemo. Although that is more the exception than the rule. I was told more often that chemo is harder and rads is easier, definately not in my case!! Every aspect of this journey is soo personal and very difficult choices, good luck deciding on which way is best for you.

  • Elizabeth1889
    Elizabeth1889 Member Posts: 1,036
    edited December 2012

    I found radiation more difficult than chemo, too. Sometimes I wonder if the lumpectomy/rads option was the correct way for me to go. The first few weeks were just a fog so I followed the recommendation of the BS. Now I treasure every day and hope for the best.

  • ruthbru
    ruthbru Member Posts: 57,235
    edited December 2012

    A mastectomy is major surgery and can have lifelong SEs of it's own. Also, going flat can be emotionally challenging but if you choose reconstruction, you are faced with more surgery (or surgeries), each with it's set of risks, recovery time, and potential problems (check out some of the reconstruction threads...yikes!). Some people have to have a mastectomy, or feel totally sure that is the way they want to go. If you are on the fence, then I'd do the more conservative route, because once your breast are gone....they are gone forever.

  • Kay_G
    Kay_G Member Posts: 3,345
    edited December 2012

    You have a lot of good info here already. And as you can see, different options for different people. I unfortunately didn't have an option of lumpectomy because of multi centric tumors being located in different quadrants. Before sx, the MRI showed no cancer. My onc suggested I speak tithe surgeon about lumpectomy instead of mx, but the surgeon was adamant. And thank goodness she was, because the pathology found some cancer in different spots stilly the breast after neoadjuvant chemo. I was also 47 at diagnosis and her2 plus, but they knew I was stage 3 with nodal involvement. I hope you have no cancer left when you get your surgical pathology back, but just know that it can sometimes hide on the scans. Back to your original question, rads were not bad at all for me. They did takeaway lot of time, but what is six weeks compared to the rest of your life. My onc was hoping I could do lumpectomy so I'd still have sensation in my breast. I couldn't and don't regret it, but do miss the sensation. With the mastectomy, I. Am completely numb, not sure if everyone is or not. It's been a year and a half since surgery, I don't think I'll ever have feeling there. I was thinking of getting a bilateral mx for peace of mind, but I listened to my onc and kept one breast. I am glad I did because I do like having sensation in at least one breast. And I really don't worry about getting BCinthe other breast, just worry about distant metastasizes. Just weigh all the pros and cons and make the decision that is right for you.

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