Chemo first, then Mastectomy

Ilovemy3girls

I am considering having chemo first then a mastecomy with reconstruction after.  I am looking for thoughts on the pros and cons of doing treatment in this order.  The way I see it, I will be facing the chemo at my strongest.  I am also counting on some good days in between treatments to work and take care of my family.  My family helpers will be back from college  in time for my surgery recovery.

Thank you ladies.

lexislove

I also did chemo first. I did ACT X 8. My docs wanted to shrink the massive tumor as well. I agree with Madyln, I don't feel that there are any cons going this route. I also was able to feel and see my tumor shrinking. I started with an 8cm tumor and ended with a tumor measuring 1.4 X 1.4 or 4cm in diameter. At the beginning I was worried because most women go the surgery route first, but after a few months I was glad to have gone the chemo first way. I can sleep a bit better knowing the chemo worked for me.I finished chemo Feb 12 2008. Any questions just ask. Good luck, you'll do great

Debbi5108

Nancy,

     I too had chemo first and will be done in three weeks, set to have my bi-lat mastectomies Feb 24th.  I have mixed views and will explain.

1st: I like Lexis and Madalyn  was happy to be able to tell my tumor was shrinking, and that it made the chemo worth it and easier and also didn't seem to have many SE's except for the fatigue a few times I might have vomited but, never was I incapacitated.  I had a port placed with no problems and actually have considered keeping it as the chemo has done a number on my veins not to mention when you have a bi-lat blood draws in the arms is a NO NO so it might come in handy later on down the road.

2nd:  I now sit and think that if I had opted to do the surgery and then chemo when my chemo was over then my exchange surgery would be within a couple of months more than likely , where as now I will have to have surgery, with immediate explander placements , get all the fills and then wait 2 to 4 months for the exchange and to be quite honest I would really love to have all this behind me and since everything happens so fast I didn't really have time to think it completely through and the determining factor for doing it the way I did besides split second decisions or so it seemed was my daughter (16 years old) bless her heart, she said " Mom what if you are so sore from the surgery and all or the expanders cause pain and you have to lean over the Porcelin GOD!!! excuse my spelling, that may cause you more pain"  and I listened so I think the best advice I can give yoy is to PLEASE take time to really think this over and you will make the best decision for you.  Good Luck and feel free to pm me anytime.

Hugs and Prayers to you

Debbi

Deb-from-Ohio

I am currently undergoing chemo, have done 4 rounds of A/C and I hated it....I wished I would have had it as easy as the others.......I now go Wednesday for 12 weekly sessions of Taxol, then Surgery (lumpectomy) and possible node removal, then radiation.......The A/C after just 3 sessions had shrunk my breast tumor by 90%, which was the idea........that's nice to know.......however no clue as to what it's doing in the lymph nodes...........especially since right now it's hurting..........But from what I understand, alot of docs are going this route, chemo first, then surgery........

Luv, hugs and prayers

Deb

Lifestooshort

I would definitely do the chemo first.  I did 2 cycles of A/C and my tumor did not respond.  Looking back, I am sooooo glad I didn't do the complete set of treatments all for naught.  So I ended up having the mastectomy because the tumor was increasing in size.  After that, finished with a cocktail of Gemzar and Cisplatin for insurance and 33 rads to boot.  If you do it up front, you can tell for yourself the chemo IS working!!

 Hugs to you.  It's tough, never thought I'd see the end, but you WILL make it through it.

Laurie

NancyD

The only "con" to doing the chemo first, that I can think of (because it affected me), was that if you end up needing radiation, it may delay your recon further than you expected and make some recon choices not practical.

I had four doses of TAC before surgery and two afterwards. If I had the time to research all the methods of recon, I would have realised that two doses after surgery is not enough time for a PS to complete expander fills, which they prefer to do, before my radition treatments started. In the long run, I found I preferred the idea of an autologous tissue transfer such as a DIEP or TRAM recon, so I'm glad those options are still open for me.

lexislove

dcaudill,

I had the same response with the AC, after 3 cycles they said it shrunk about 85%. Powerful stuff, but horrid. I tolerated Taxol better, I hope you do as well. At surgery they will most likely check the lymph nodes to see if cancer is or had been there. It does get better.

Deb-from-Ohio

lexislove, I just wish time would move quicker......I was just diagnosed Oct 23rd and after those 4 A/C treatments, it feels as if it's been 4 yrs ago......guess I am just an impatient person or something, just really want my life back...

Luv, hugs and prayers

Deb

Ilovemy3girls

Thank you ladies for all your kind and uplifting words. The most specific concern I have of getting chemo first is if all the cancer is not removed during surgery that I would need another round of chemo afterwards.  Nancy D. I see you had 4 before and 2,  I too am leaning toward autologus recon and need to decide to go DIEP or TRAM.  The DIEP is not too widely practiced out here in the burbs so I am looking into a PS downtown.

 Tomorrow I am having a scan of my ovaries and then will meet my oncologist.  And it is time to have my colonoscopy.  Getting that the next day.  I know this is just the start of it all and God will be by my side.

I am glad you ladies are here.

lexislove

dcaudill,

When I was in the middle of chemo time went so slow. I will admitt it was brutal. But, after that it went so much more faster. I had got my surgery date and had something to look forward to. Yes, I couldn't wait to have my mastectomy. I will tell you what got me through the rough moments....I just kept telling myself that all of the chemo, shakes, depression IS TEMPORARY. It does go. It will be 1 year on Feb 12 that I finished chemo. I can honestly say I feel like my old self. Your not being impatient, you just want your life back to normal. The NEW normal.

Deb-from-Ohio

Hello Lexislove

  Nice to meet you all of you fine ladies in this forum.........it is brutal......I'm so glad I'm done with the A/C.....I had a horrible time with it....I think I had every single side effect known to that cocktail.......next is the 12 weekly sessions of Taxol......after that Surgery. I'm not having a masectomy though, am having a Lumpectomy, and most likely removal of some nodes since they already know it's in there....... It just feels I guess as if I have been going through this forever.....but it's nice to hear from someone who has gone through it all......I keep telling myself the same things you told yourself, but man......it's hard........But you give me hope!

Luv, hugs and prayers

Deb

NancyD

Nancy,

My onc and BS work together a lot, and they like to split the chemo up so there's something before and after surgery. The plan was to do 3 before and 3 afterwards. The CT/PET scan I had after three doses showed such a good response, that they decided a fourth before surgery would be well worth my while. 

The only downside to splitting it up was that I had started regrowing my hair as it was about seven weeks between the fourth chemo dose and the fifth (to allow for the surgery). I tried not to get too attached to it, as I knew I would be losing it again, but it was somwhat depressing having it come out again.

ejlj

ilovemy3girls,

I think you need to listen to your gut on this one.  once you decide, there are no DO OVERS.  I chose to have chemo up front with Taxol/herceptin.  I couldn't stand having to wait for a surgery date.  I felt as though I had to be doing something and not just waiting.  Waiting for me was just giving the cancer an opportunity to grow bigger and stronger.  I noticed a change in my tumor almost immediately.  Even my onc said "WOW".  Within days of my first infusion, I started feeling shooting type pains through my tumor site and it actually felt smaller and softer.  This gave me great peace of mind that I made the right decision for ME.  Also as LIFESTOOSHORT, stated you'll also no if the chemo is not working.  At the time of my surgery, my tumor was undetectable via MRI but was still seen once sent to pathology.  My doctor said that it now resembled swisscheese and not a solid tumor and it's aggressive nature was greatly decreased as well.

The only down side I see is that you'll never know your true staging.  Nodes that may have been positive, may be negative at the time of surgery. 

Good luck with your decision.  Keep us informed as to what you decide.

P.S.  I have 3 girls too (and 1 boy), ages 12,10,7(4)

jancie

I agree that your body is going to be the strongest prior to surgery so it makes sense to do the chemo first.  There are lots of women taking this route.  Years ago it was always get the mastectomy and then chemo but I think the trend is changing.  So much has changed as far as treatment in the last 10 years, let alone 5 years.

I don't have a plan in place yet but my general surgeon told me yesterday that he suggests I do chemo before any other procedure.

Ilovemy3girls

ejlj and all,

As far as not knowing my true staging before chemo, my BS will putting in my port and doing the nodes on next  Monday.  That way we'll know my stage before chemo does it's work.  My onc and I agreed on cancelling my colonoscopy so as not to overwhelm me and replaced it with a PET and EKG.   My treatments will be every two weeks- no week in between for me to regroup or for the cancer to regain it's momentum. 

 I am considering Monday as Day 1-it is really happening. 

 I have a Read the Bible in a Year that I will be using as my time clock.  I have been meaning to get to that for a while now.   For tonight, I think I will have to take a few Tylenol PMs to get to sleep.

And I met a woman at my ONC office that looked really cute.  Then as I looked at her blanket and book she had with her, I realized she was a chemo patient with a great wig on.  I would have never guessed it was a wig.  I'm thinking the hair thing will not be that big of a thing  for me but you never know until it happens.  We'll see.

Planning on hanging tough with you all,

Nancy M.

NancyD

Nancy, a good wig does make a difference. I'm wearing my wig in my avatar (at least the one that's up there on 1/8/09, LOL. I may change it in a few days to show my new hair.). It's color was a little darker than the hair I lost to chemo, but it was styled very closely to the way I wore my hair. Many people didn't realize it was a wig until I told them.

It was not cheap (@$300), but most was covered by my insurance. Since I work in NYC, I wanted to look presentable. However, since I was wearing it for almost eight months (April to mid-December), it felt good to finally ditch it about a month ago.

It's not the worse thing in the world, having to wear a wig, but I would rather it was something I did because I wanted a temporary change in my look, not a daily need.

ejlj

Nancy-good luck on monday.  keep us informed as to what cocktail you'll be receiving.  i also recommend treating your self to few extra indulgences before that time.  before my first treatment, i bought my self a nice bag to carry all my stuff for chemo, a really pretty and soft blanket to cover up with and many things to do like games, books or movies that i could down load onto my ipod.  i have to say by the time it came for me to actually go in for treatment, i was really looking forward to it.  reading the bible is a great idea.  i've always wanted to do that too

tina

econmom

Ilovemy3girls,

Hey, I am from St. Louis, but live in NY now!

Anyway, I too did neoadjuvant chemo  4 AC, 2 Taxol, 2 Taxotere (due to Taxol reaction), finished in October, then had a bilateral mastectomy with expanders on 11/12, starting rads next week.

Here are some pros/cons that I see:

PROS

(1) You get to see how the chemo worked.  My post op path report showed no sign of the IDC, an excellent chemo response.  During the chemo the palpable lump of DCIS (that sent me to the doctor for dx to begin with) became undetectable as well.

(2) You go through chemo without being weakened by surgery.  I had a fairly easy time with chemo.  Bonus:  after surgery it is tough to wash your hair, but having had chemo first, I had no hair !

(3) Psychologically, chemo is often considered the worst part of treatment, so getting it out of the way it nice.

CONS

(1)  Staging.  I did not have a SNB prior to beginning chemo (my axilla lit up on the MRI and my biopsied IDC came back tri neg, so chemo was a given anyway), so I do not know what stage I was at.  Stage II or III depending on the extent of node involvment.  This can be an issue for radiation.  I am a borderline case for yes/no radiation since post-surgery pathology looks good but guidelines for radiation seem to be based on adjuvant patients--i.e. nodes, margins, and lymphvascular invasion prior to chemo.  I am going ahead with rads, but wonder if I am taking unnecessary risks or if I will ruin my chance at reconstruction.

(2)  Psychologically, some women want the cancer OUT NOW, so getting surgery first is a relief.

I should note that studies suggest no difference in outcomes for neoadj. vs. adjuvant treatment. 

ejlj

econmom-fyi although i burnt really badly during radiation & had an infection that the surgeon tried to asperated and culture, but accidently ruptured my expander (yes, i have a semi--flat tire), my skin now looks great.  I finished rads mid-dec.  use lots and lots of aquaphor or whatever works, no bra, and cotton t-shirts for comfort.  hopefully reconstruction will go fine for you even with radiation.

tina

mom_of_2

ejlj

Just sent you a p.m. then saw your entry about tumor not showing on MRI but in path area looked like swiss cheese. I pulled my path report to find the picture my oncologist drew to explain in terms we could understand and it looks like swiss cheese! Solid tumor gone...not detected on MRI or PET...remaining cells after neo adjuvant scattered.

The waiting to get the cancer out was the worst but response to treatment helped me wait! I never let down my guard even as my husband was shouting the MRI results from the rooftops. So glad I listened and stuck with treatment plan AND followed through with surgery. (A lot of people didn't understand why I was having surgery if chemo worked). I explained the best I could and ended the conversations with "I am on a journey that I must complete for myself and for my kids". 

Ilovemy3girls

Econmom-

From St Louis too? Why do you call yourself econmom?  I studied econ too.

To all- Tough blow on Friday with Pet scan result.  Many nodes in underarm, clavicle nodes and supraclavicular nodes involved too, moving me from stage 2 to 3C.  My BS says now maybe not curable due to supraclavicular cancer. Onc says we're going to hit it hard and then see. I'm going with the oncologist. I finished informing my close family and friends and am relieved that part is done so now we can get down to business.   Anybody else had supraclavicular node involvement? 

rdrake0

Were you asleep for that nuclear shot in the nipple before the sentinel node biopsy?  You would remember that shot if you were awake, believe me!

Ruth

mom_of_2

Ruth

Yikes nuclear dye injections was the most painful procedure I have had including bi lat mastectomy. I kept asking about how they get they dye to the nodes but no one wanted to tell me. Silly me...I thought IV like MRI. By the 3rd injection I was surprised my husband didn't bust through the doors because I was screaming. I made the tech wait for the 4th and final injection as long as she could without having to start over. To date...you are the first bc patient that has mentioned it!

rdrake0

Me too!  That was such an ambush.  They don't tell you it's coming, and won't talk about it.  A friend told me about it before I went in.  So I begged my doctor to make sure I was numb or asleep.  He assured me it would be ok.  NOT!!!  I have had flashbacks to it ever since.  Can't sleep.  We BC surgery women need to ban together and insist that procedure be changed so that we are heavily sedated for it. 

How many of us out there are in favor of that?  Anyone?

I think I will start a new thread on this!  Look for it, OK?

Ruth

Artemis

Hello, Ladies ~

I had my first visit with the surgeon today. (Jan 12).  He recommended chemo first, then surgery for me due to the size of my tumor and its being grade 3.  I agreed it sounded like a good thing; I like the idea of knowing whether or not the chemo is working, and it would be great to see/feel my tumor shrinking!

He also spoke of sentinel node biopsy as being way better than the "old" way of taking them all out during surgery or whatever, but with all this talk of the pain from the dye injection I'm wondering what I've gotten myself into.

I realize now I missed some of what he was saying, but I know some of you wonderful ladies can explain it to me:  if I agree to having chemo before surgery, do I have to have the sentinel node biopsy?  Do they go hand in hand, or can you have one without the other?

Thanks a bunch,
Artemis

lexislove

In my situation, I started chemo right away ( the same day I was diagnosed ). I did not have the SNB before. My lymph nodes were not clinically palpable and did not show up on the ultrasound and scans. Of course that means nothing really. That being said, my onc stated that they will not know for sure 100% if the nodes were involved or not untill the surgery and the pathology comes back.

I had read in an article about 6 months ago from YME regarding neo adjuvant chemo and the performing a SNB. It stated that neoadjuvant chemo will only have a complete response on the lymph nodes 30% of the time. Therefore, 70% of the time the nodes still show evidence of cancer. Meaning some woman would definatly benefit from the SNB and the others, node negative, are subjected to extra surgery. I think in most cases though a SNB would be performed BEFORE chemo starts. I always seem to be the exception.

Patty4

 I too had chemo first and agree that it was good to be at my strongest going into the chemo. Also, I think it is the worst part and nice to get it out of the way. Had surgery w/bilat expanders, did the fills quick b/c they wanted to get to the radiation. Did my radiation and then had to wait six months for the exchange. The skin looked good, and the medical professionals that have seen it think it is a great result post-radiation. Used tons of Eucerin for the whole six months.....

I think there are pros/cons of each, I did my chemo first b/c of the size of the tumor and the proximity to the chest wall, so that is what the docs recommended. I trhink I'd go with the doc recommendation.....

Good luck to you.

econmom

ilovemy3girls,

I am an economics professor, hence my screen name.

That is tough news from the PET scan, but your onc is right--hit it hard and see what happens.  I don't know about others, but I find my onc and radiologist are more positive than my BS.  As for all the nodes lighting up, only a biopsy is definitive about node involvement. 

wiggy

Hi,I don't know if anyone will reply to this as I'm in the UK and I'm not sure if the time diference will cause a problem.

 I'm keen to know how soon after diagnosis people began thier chemo. One lady said she started the next day but I'm not starting until 26th Jan, which will make it 5 weeks from diag to start of chemo. I've had all the pre-treatment tests so now I just have to wait and twiddle my thumbs which will drive me CRAZY!  Is this a normal time scale?  Wiggy

Artemis

Hi, wiggy ~
I gather it's different for everyone, and yes, the waiting makes you crazy!

I had my biopsy on Dec 31, got the results on Jan 6, saw the surgeon Jan 12, and will see the oncologist Jan 19.  It blows my mind to realize I'm only two/three weeks in; seems like it's been forever!

Anyway, I hope to get my chemo started soon.  This is just nuts!

lexislove ~ I asked the surgeon's nurse when the SNB would be done.  She said it's done during surgery unless the onco wants it earlier.  This tells me nothing since I haven't seen the onco yet.  What I really want to know is that if the onco wants it earlier, is someone going to sedate me for the injections?!  Hopefully, I can find out more about that on Monday when I see the onco.

Artemis

lexislove

My onc said to Me, that it doesnt really matter wether they do it before surgery or after.If your onc wants it done before, they can sedate you if you want. The onc will explaine it to you more.

In my case I just wanted to start my chemo ASAP, and my onc agreed.

Good luck with treatment!