Radiation vs. Mastectomy - Decisions, Decisions

Like you, I started freaking out at the thought of radiation.  I even considered skipping it.  Then I thought more. First and foremost, this is a personal thing.  And my thoughts may not be the same as yours--no offense intended, this is just my process.

Mastectomy is a really big deal.  And well, DCIS isn't.  Its scary, its cancer, it can lead to worse things but its not nearly as scary as many other things.  Reconstruction is a really big deal.  I thought it would be easy but I met with two different plastic surgeons and its not.  Implants, IMHO, are a hunk of stuff on your chest.  If I have implants, can I still have tickle fights with my 8 year old?  Or would I have to wait so long while I went through everything that he no longer wanted to play such games.  The other reconstruction surgeries really freaked me out--bad enough to have breast cancer but worse yet to face a surgery that might preclude me from doing "stuff'--okay maybe I was never going to be an olympic class kayaker but hey, one never knows, right?  The idea of a surgery that would keep me from doing things forever was not appealing. And then there was the nerves issue---it seemed to me that the purpose of much reconstruction was to have something that made my shirts look good or gave my DH something to feel up.  Well he just wanted me around and flat out said he thought reconstruction surgery was dreadful and that he didn't want me to go through that for him, he just wanted me HERE.  And Finally from this list I learned that even with a mastectomy, you can still end up with radiation.  Yikes.  If thats the case, whats the point?

In the end I went with lumpectomy and rads. I had a reexcission.  I missed a few full days of work.  I survived it.  I'm glad I chose the route I did.  Rads wasn't so bad --I used calendula creme through out and 2 weeks after my skin looked fine.  As someone said, these are not your moms rads, the doses are much lighter than they used to be and the machinery much more precise.

I will say that I currently have a touch of radiation pneumonitis.  It is mild, it is going away on its own, its a drag but not nearly the drag of recovering from major abdominal surgery.

Good luck with your decision.  Feel free to post your questions thoughts and the like

I had a mast.  I would give anything to have my breasts back.  It is a big surgery and you are stuck with numb and fake boobs for the rest of your life.  I am doing rads now...it's not that big of a deal.  It's a pain going every day and yes I hate it....but if I could have kept my real breasts....... in a heartbeat.  My recurrence rate is 4%....very low but not 1%.  I miss my breasts every damn day. 

3monstmom- Very well said!!!!  I love how you phrased it all.

The decision IS so difficult!!  I first chose the lumpectomy/ radiation/ tamox door.  As soon as I was told by my BS I had breast cancer, I immediately wanted it out.  Went to see the radiologist and like you started to have second thoughts.  My cancer was at that time, on my left side.  My concern was for the damage that would be done to my heart and lung as well as the concern about if the cancer did return, I would not be able to have radiation again and would not be able to have a good outcome with reconstruction.  Then came the tamox drug thought.  After speaking with a few of my oncology friends, I again started to question the path I had chose.  But I went ahead and had the lumpectomy, but all the while worried about the radiation and drugs.

My pathology came back with not only multi focal cancer but also with much more cancer than the mammogram showed.  Thus, I would have to have a mastectomy.  There was a part of me that was upset about losing my breast (s), and then there was another part that was relieved that I didn't have to go through radiation and drug therapy. 

Would I like my breasts back?  Only if I could go back in time where I was ignorant to what cancer does to you and changes you.  I am happy with my decision.  My reconstruction is going really well, and although I think I had really nice perky breasts, I really like my new ones, and I still have allot of feeling in them (not the same as before, but I have feeling).  I am able to go bra-less, look like I have a bra on, and wear shirts I never could wear before.  There isn't anything I have given up with regard to lifestyle.  I still run, lift, golf, swim... etc.  If the cancer does come back, I will have other tools in my box that I will still have to fight with.  I pray I won't need them. 

 I wish you peace with whichever path you choose.  It is very personal!  Either choice will make you cancer free and that IS the most important thing.

I would like to LOUDLY second what swalters said about having time to make a decision.  The lucky part of DCIS is that there is no rush to make a decision.  You can take the time to fully inform yourself.  And if you have not gotten a second opinion, do it.  Do you have a major breast cancer or just cancer center near you that you could check out?

I was diagnoised on November 16 last year and didn't make a decision on surgery until late January.  I saw 2 breast surgeons, 2 plastic surgeons specializing in breast reconstruction, 1 oncologist and 1 radiation oncologist who specializes in breast cancer.  I had a needle biopsy, an MRI and a CAT scan to get more information about my situation.

People used to tell me that when I made the decision I was really comfortable with, I would know it.  I thought they were just saying it but I found they were right.  When I found the right breast surgeon for me, I was able to make the decision like that.  My first candidate was really nice and really competent, I'm sure, but something didn't click.  With the second surgeon--who I met AFTER the plastic surgeons and the oncologist---I felt "right" and we even scheduled the surgery after that meeting.

I know there are forms of treatment that won't be available to me for that boob should I have a reoccurance--not just Zaps but lumpectomy as well because there just isn't that much there!--and I'm okay with that. 

If I had been diagnoised with invasive cancer I would have been more inclined to go for a mastectomy but with DCIS, that seemed like using a cannon to swat a mosquito.  I will say that I have decided that if I had a reoccurance on my left, I would just go for a mastectomy without reconstruction.

That trade-off is definitely something I struggled with... ultimately I went against standard of care and got neither! (I had lumpectomy + re-excision to get clear margins, but am not doing rads or Tamoxifen.)

I have personal reasons for making this choice, but basically my "adjuvant therapy" is radical diet/lifestyle change. I was living a very cancer-inducing life before my diagnosis so I've drastically changed all that. Of course, there's a small chance even with clear margins that there were some stray DCIS cells missed, so if in a year or two there is more DCIS growing, at that time I will probably go with a nipple-sparing mastectomy with microfat-grafting as reconstruction. 

For me, this is the right decision right now, although for 99% of women with DCIS it probably isn't... ask me in 10 years whether it was the right one.

kick, throughout the winter I was taking 5,000 IU daily. Now that sunny weather is here, I'm taking 2,000 IU daily plus taking cod liver oil (naturally high in vit. D and other good nutrients).

My 2 cents from 8 years out: I was dx'd by routine mammo and US on a Fri.  Got bx on Mon and diagnosis on Tues.  Sched. mast for Friday because my bs was going out of town.  I had spent the weekend on the net and mostly here.

I ck'd the local rads dept. and all those surrounding our small town--couldn't get a really positive recommendation on any of them re: the rads techs (IMO and my bs, that's who ya gotta have a lot of faith in for a good rads outcome.) My bc was on the left, but we had been watching microcals on the right for many years.  I had just turned 59 and am considered a "young" 59.  LOL, whatever that is.  I'm also a nurse.

I choose mast over lump/rads because I was not convinced I could get good/safe rads locally and was unable to travel 2 hr each way for daily rads. at a center I could have trusted more.  My bs was able to co-ordinate a plastic for recon on the same surgery day as the mx. 

Would I do it that way again?  Hell,no.  My lesion was 1.9 cm. Er + (after the first path report saying neg--glad I questioned that!) Pr+, Her2 neg.  neg. SNB.  I did tamox for 2.5 years and had to quit due to side effects wearing me down to the nub and declined chemo because it was considered to help only 3% of women with my dx.  I had no family hx that i knew of. 

Please take away that you have TIME.  Get more onc. consults, at different facilities, even different towns.  The protocols are mostly the same, and docs in the same group, or even towns seem to think alike.

With your family history, I can understand your looking at bilat mast.  My best friend had about the same and after a few years, choose bilat just to quit having to worry every year and do bx so often.  And she didn't have DCIS.

As noted above, when you are ready and find the doc who instills trust in his/her recommendations, you will make your decision.  And you will feel pretty good about it.  You have a very intelligent gut and have listed both sides of the arguement exceedingly well, so you are informed. 

My fear of rads made me decide about mast.  Many others have made their decisions for multiple reasons and you will find the reason that will help you make yours.  It could be as off the wall as a robin crapped on your car, but whatever it is, you will know it.  And DON"T look back.  It will be over, done with and a huge relief and weight off your shoulders.  I actually made my decision sitting on my patio after working hard in my garden all day.  It just came.  But like you, it was tough to get there and I Did educate myself before jumping.

Blessings and all good things for you both making decisions.  If all else fails, get a 2nd or 3rd opinion.  They really do help.

OH, and get copies of ALL reports, diagnostics, labs, etc and operative reports from each and every doc.  Office notes are a help,too.  I carried a note book with Everything in it to each appt in a tote bag.  That way you will never have to hear "oh, sorry, we don't have that yet" or it was misplaced.  Have your own copy of Everything. 

I'm kind of where wyldblumusic is...I do think about it, and wonder sometimes, but don't regret my decision fo have a lumptectomy and rads.....I'll be 67 in September, so if It comes back I'll reconsider a mastectomy...or maybe even a double...if "it" should return...

My second anniversary mammogram will be next Monday....It's still unsettling....

Kermit

so happy to hear you met with a ps.  I feel so strongly that if you can keep your breast you should!  I know mine had to go but I wish I could have kept them.  I think you will be  happy that you made this choice.  I am close to being done with rads and it really isn't so bad.  My skin is holding up really well and my fatigue isn't like post-surgery fatigue at all!  Hope all goes well.

It's my understanding that 10-15% of people with confirmed DCIS on biopsy will have some invasive component discovered (microinvasion or more, but usually a microinvasion) on biopsy. 

It's also my understanding that when they talk about 'clean margins' they're talking about DCIS and DCIS only. If there's other funky stuff present which is lower on the cancer food chain, it's usually not counted in terms of margin status.  I had a similar path report to you, kickon2it, and that was what my BS had to say about it.  Apparently it's because they won't re-excise for LCIS or ADH or ALH etc etc etc......  I guess it comes down to rads and Tamox for the residual stuff.  Hate that...

hey kickon2it

Lots of time is for deciding what course to take--like which breast surgeon, lumpectomy or mastectomy, etc, but once you start with the first procedure, they do like to keep the ball rolling.  I did know the 8 week thing as it came because I was trying to schedule myself around some pre-planned holidays.  Didn't realize you were so close to it. 

And like sweatyspice, I also had some ADH [talked to oncologist about it yesterday].  Per what my oncologist said, sweatyspice is on the mark---it is "down on the food chain" and not something that earns a reexcission.  So like you, my bad boobie shows some ADH but that is not grounds, in my mind, for a mastectomy instead of rads and hormone treatment.

Zaps can happen while your radiation oncologist is away.  The key is whether the radiation oncologist has set-up the treatment plan.   My radiation oncologist was out on maternity leave when I was being treated.  I saw her before, she set up my treatment and another radiation oncologist saw me in her absence.  That appointment is really not a big deal---they check your skin weekly and check to see if you have any issues.  The radiation oncologist isn't in the room when you get zapped--at least mine wasn't--and I think that is true for most breast cancer zapping.  It is an unusual thing for us but not in the world of zapping.

I would imagine if you needed more surgery they would have told you before everyone went away.  So if you have decided to go ahead with the zaps, then you can just call and schedule your first treatment and get your schedule.

Does that help?