If you could redo your treatment-anything different?

I might have had a mast. if it had been recommended to me but it wasn't. Now I have that 'worry'.

I also had to quit Taxol after 2 doses due to extreme neuropathy (that still liners some today, especially in winter or when I get chilled from air conditionining or cold dampness) so I'd never had done it had I known I'd have reacted so badly to it.

And I'm glad I had a port despite having a colapsed lung from it being inserted and then it having to be dug out after my body encapsulated it.

But I'm pretty much okay with what I did, what I got and what my doctors recommended.

I didn't have any treatment but I definately would have had a bi-lateral mast instead of just the right side.  I would not be facing another mast on Aug. 4 if I had done so.  However, having beaten myself up over it during the last month since dx, I have come to the conclusion that I just need to get on with it and stop thinking about the 'what if's' because it doesn't change anything.  I did what I did based on the info I had at the time and that's all I could do.  Maybe if I keep saying over and over, I'll feel better.

Take care.

I would change that I would have had a mast, and then gone for recon to a ps that I had interviewed and felt comfortable with.  I would not allow my bs to have made the decision about my ps.  I would also not have agreed to surgery 1 week after diagnosis.  I feel I would have done a great deal better with time to wrap my head around diagnosis.

I would have made my own decisions instead of being led by my dh.  It took a while for me to grow a backbone and after I did, things got better, even tho I had to have recon twice.

I would definitely NOT have kept telling my family I was "great".  I would have been perfectly honest with them and  told my kids  to come home.  I would have leaned more on my family and given up the "supergal" image of being tough.

One gets no points for being tough!! All that does is push you family and friends away from being as helpful as they could be and want to be.

So, I was very alone during my time, except for the life saving people on these boards and I mean that literally.  When I thought I had colon cancer 5 mos after dx, I was ready to hang it all up and just quit.  The women here kept me from committing suicide because they cared and they cared because I was honest with them.  I should have done the same thing with my family and friends.

I gave up Tamox after 2 1/2 years due to quality of life issues.  My onc agree and I have no doubts of that being a good idea.  I declined chemo,considering long term side effects, and my onc agreed.  By the time I saw him, I had to have my path redone because my gut told me the first place had screwed it up and I was right.  I chose mast instead of lump, because lump has slightly more recurrance, and I didn't want rads.  I never even considered a bilat.  Why cut up what is not giving you any problems.  Symmentry is just as possible with uni as with bilat. 

We all make decisions with the info we have at the time.  The deal is: we must educate ourselves and be able to discuss options with docs and others.  We have to make sure we have all the info we need.  and that takes TIME> 

I don't know if I would change anything I chose to do, rather, modify it somewhat.

I was diagnosed in Dec/04 with mucinous carcinoma left breast, large tumor,  5.5cm.

I opted for bilateral mast. with immediate tissue expander recon. I had 4 chemo (AC), several tweeking type surgeries on the new boobs, and a total abdominal hyst. all in 2006. The only thing I feel I may have rushed into was the hyst. I had it about 6 weeks after I finished chemo and I feel I may have rushed into that. My tumor was highly ER PR positive and I felt that I must immediately have a hyst. (not necessary) I guess I could have monitored that situation in hindsight. I have been taking tamoxifen for 3.5 yrs or so with a little time of arimidex which crippled me so much I returned to tamoxifen.

I chose aggressive treatment, have never second guessed my course of treatment.

best to all,

Tina

I had a choice of lumpectomy or mastectomy and I think choosing the mastectomy was a good decision. With just a biopsy I was stage 1 with small, less than 2cm tumor. After mastectomy and pathology report I was stage IIIA, axillary disection with 6 of 25 nodes involved. I would not have had any reconstruction, due to the disappointing results. I would have requested having a port, only 6 TAC tx and my veins in my good arm are shot for the time being, I keep hearing that they heal, but how long? I was 6 months late having my mammogram. If I had gone at 12 months would I have ended up with DCIS and no node involvement instead of IDC and 6 nodes?

Biggest thing,  get my information and learn all about bc, the pathology, what it means, find out about chemo se's. I went in like a lamb and never again will I let anyone choose something for my body that I haven't educated myself on.  Man, was I lame back then.  I have this site to thank and it's wonderful women that guided me, supported me and taught me how to be a lion about my own health care. Sounds a bit corny but  I really feel like a lion now and say NO, not until I understand what  it's going to do to me and long term side effects. 

.

Good question!   Made me think a bit.   Yes, there are things I would have done differently.   This wonderful web sight wasn't available when I was first dx--I backed into it researching Tamoxifen questions after having had ax node dissection, lump, 4 A/C, 36 rads......

I believe that I had the gold standard of treatment for my particular diagnosis at the time.   But, what I love about these boards is the ability to learn of new things...read others' experiences...a continual learning process!

Yes, it's a given that upon dx, you go into panic mode and want things done ASAP!   Now, I know that you really do have time to think things out, research, etc--just hard to do when in panic mode.   Knowing what I now know, I should have insisted on a port for my chemo.   Maybe I had great veins then--I sure don't now!   Basis new tests I've read about here, my need for chemo may have been unnecessary.   But, I view this gained knowledge firmly believing that at that particular time of my life, knowing what I did know, trusting the team of doctors put in place to treat me--all I can think of is to say I did what I thought was best for me at that given time--I cannot fault the choices I made at that time.

I am so grateful to read of new things here that people post--it mostly helps educate me should I have a recurrence, rather than things I should have done, had I known about them.

hugggssss, junie

If I could do my treatment over, I probably would have opted out of Adriamycin because of the effects it could have on my heart esp. since I am her2++ and am now on herceptin but hey.......

I probably would have had both breasts removed and although my doctor agreed that was an option he poohed poohed that suggestion at the same time.  I wish I had insisted but hey......  hopefully I got this thing beat, should I have a recurrence I am much more educated thanks to the women on this website.

Hi All,

I've been reading all this,and I probably regret hormone therapy the most. The effects of the Arimidex have been permanent, and now I face an endometrial biopsy from the tamoxifen. But my thought was the same as everybody else, at the time we're making these decisions, were in a panic, confused, new to the whole bc thing. It would be great if there was an impartial patient advocate to discuss all the implications, statistics, bc lingo...exp. relative vs overall benefits and risks. I say impartial, meaning not someone who just  reinforces the dr.s opinion. It should be at least a 1hour sitdown facetoface with a knowledge person who has no agenda.I didn't find this websiteuntil my treatment was almost over, and a lot of women, repeat  A LOT don't use the internet at all. Don't think it'll ever happen, but one can only hope.

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This thread would be great to have listed for newbies to read through, I remember how panicky I was and let others make decisions for me because I thought okay the docs know whats best.  But reading the posts and seeing that so many women would have changed some things it would be great a great section.

I don't regret it all the time but anytime I think I feel "something" in my affected breast I kinda wish I had had a mastectomy and not just a lumpectomy.  But I have a feeling I'd still be questioning what I felt in that scar too!

I knew when I made my decision that whatever I chose I didn't want regrets later.  I could've declined chemo but I chose to have it.  I'm glad I did have it.  I know it was the right thing for me to do.  I'm also glad I had the BRCA testing done because that took some worries away - or at least to a far far far far far back burner!

So - short answer - nope no real regrets.

At just 6 wks past my last chemo treatment, it's way too early for me to reply to this question, but I think I will anyway.  I reserve the right to revise my answer 2 years from now.

I can't think of anything I would change about my treatment decisions.  I made a few choices that other people might think were odd:  1) For my dx and treatments, I decided to travel 110 miles to a comprehensive cancer center that was part of a university teaching hospital, rather than going to our regional hospital;  2) I chose a (unilateral) mastectomy, despite having been given the option of a lumpectomy/rads;   3) With an ER+ HER2- tumor and an Oncotype score of 26, I chose to have chemo;  4) Because of really sorry communication, I fired my first oncologist and asked for a different one; and  5) I asked onco #2 to reconsider her recommendation of AC, and think about giving me TC instead (which she did).

So far, I only regret 2 things.

First, I would have asked much earlier for a referral to evaluate the lump I had found in my left breast.  I could feel it, but my GYN could not; and even when he could feel it a year later, he thought it was just fibrocystic tissue.  I would have insisted for a follow-up imaging study when my mammograms kept coming back normal.  I didn't know any better at the time.  I don't know if being more assertive at an earlier time would have changed anything, but at least I wouldn't have worried for so long about the lump before finally getting it diagnosed.

Second, I would try to change the interactions I've had with my family (parents and sibling).  I pretty much assumed that, if I kept them informed about what was going on, they would provide a steady stream of loving support that would help me through my dx and tx.  I actually thought my BC dx would bring us closer together.

That hasn't happened.  My family has these inane competitions about who-called-whom-last, as in "No, it was your turn to call me!".   My BC dx didn't change any of that.  My dx has given my mother many sleepless nights in which she says she was "worried sick" about me, and "feeling horrible".  She felt the need to tell me that last night, when I talked to her on the phone.  My sister, OTOH, has called me only 3 times since my dx in January.  The last time was about 2 months ago, and we spent an entire hour discussing her troubled life.  I feel like I'm supposed to set aside whatever problems I'm having (like BC), in order to buoy my family members up and keep them feeling strong and comfortable.

So, as part of the re-do on my treatment protocol, I would be more direct with my family members about what they could do to help me through this BC minefield.  Then, if they didn't come through (as they haven't), I would stop fretting about it and feeling like I was responsible for the miscommunication.

Yeah, right.

otter