Regret

I often regret choosing not to do chemo.  I had oncotype scores of 14 and 19, and my nodes were negative, so all the oncologists said that they couldn't recommend it, but would give it to me if I wanted it.  Well, who wants chemo??  I said no thanks, but since have met many survivors and they have ALL done chemo.  Now I'm scared that I made the wrong choice.  I just hope the tamoxifen does it's job.

I used to counsel students applying to college.  Whenever they had to make a difficult decision about what college to attend, I always told them, "Anytime you make a decision you have regrets.  Make the decision you'll regret the least."  I'm not sure I followed my own advice in this case....hope the decision doesn't kill me. 

I regret not getting a second opinion before I had a Mx. I also regret being so emotional, instead of doing another biopsy when the MRI showed another "area of suspect"....I just had them do a Mx. It was a false positive, but there was DCIS undetected by mammo, ultrasound & MRI in my nipple, so Mx was a good choice. I regret not getting a second opinion because he did the Mx without a plastics consult & now I am straight to implant B cup Mx side & DD on the right.

IT is a HUGE difference, I have a pic on TimTam's site if you doubt me!

I did get 3 opinions on reconstuction, so I learn

I regret very much not doing chemo.

My pathology stated 'extensive vascular invasion'

My Onc knew exactly what that meant, at the time it was double dutch to me. I was told chemo was 'hard' and as I was stage 1 I 'didn't need it'. My breast care nurse told me 'it's never going to come back' .....and I looked at them with big eyes, and believed them...after all they were the professionals.

When I saw the light, and realised the implications of 'extensive vascular invasion' I was straight back at the Onc, but I was out of time to have chemo. I can't forgive them for letting me believe all was safe.

Isabella.

I terribly regret having had my mastectomy. I wanted to have neoadjuvant chemotherapy to try and shrink the tumor and then a lumpectomy. I feel I was pushed to have the mastectomy and I regret it everyday. Mostly I blame myself for being scared out of my mind. I should have insisted in getting the treatment I wanted. I don't think it is the place of doctors to scare a patient so she/he complies with their opinions.

As for coping....I just cry when I'm alone if the sadness is overwhelming.

  I, too, have  a few regrets. I was operating from a place of fear  and not listening to that inner voice. I am trying now to forgive myself and move on hopefully I will be more in touch with that "intuition". I had a large lump in my right axilla that I chose to ignore last November  instead of listening to that alarm being set off in my body because of the fear of what it could be ( and I am a health care professional for 29 yrs + who intellectually knew better)  I once again stifled that voice when I just "knew" I should get the BRCA test but my onc  and breast surgeon thought my risk was low...( so I ended up with both a lumpectomy and then bilat mx)  I  am proud of myself for finally listening to that voice regarding the discomfort I have always felt with my oncologist and making an appointment to interview another ( why was I more concerned with hurting his feelings,ridiculous I know, than respecting my own feelings of dissatisfaction with his care?)

I guess regrets can be learning lessons , I won't dwell on them, I do like that phase TammyMarie

used regarding finding peace with your situation.

I regret not having my breasts removed.  My BS was a staunch advocate of lumpectomy and breast conserving surgery.  If I had had time for the shock of the diagnose to settle in, and wasn't just shuffled right off to the BS from the radiologist that did my biopsy, I think I would have been more assertive in what i wanted done.  Hindsight is 20/20.  So now I have one perky breast that healed well, and one that hangs down 2 inches lower.  Oh well......

Linda

I think I'm more fortunate than most of you - no regrets except for one minor one: I didn't have a port for chemo, and now the veins in my arm are messed up. And it's the only arm I can use now for blood draws etc.

No decision is right for everyone. What I find interesting is that some women have lumpectomy and regret it and some women have mastectomy and regret it. BC sure isn't one size fits all treatment.

I wish you all the best.

Leah

I regret not asking for a mammogram or an MRI in the time that elapsed between my lumpectomies.  I had my mammogram that first detected calicifications in August 08.  I had my first surgery in November, and my last one in January.  Then I had radiation for 7 weeks.  I had my first follow-up mammogram last month, and it showed some faint calcifications that we are watching for 6 months.  I'm curious when those calcifications developed, and if we might not have been able to catch them before my second lumpectomy.  Maybe they are nothing, maybe they are something, I have to wait what feels like a long time to find out.

If I had a do over, I would have pushed for an MRI when my med onc told me he didn't think it was necessary.  My radiation onc asked me to have one before starting radiation after a lumpectomy.  I did and a second IDC was found.  Having the MRI before my first surgery would have saved me from having a second surgery.   

I will say that I was relieved when my med onc told me he didn't think an MRI was necessary.  I really wanted to start radation and be done with bc.  Also, the NCCN guidelines (2008) stated that an MRI may be considered to check for the extent of disease, not that MRI were the standard of care.  

I have one regret...that i didnt get a double mx.  did the lump/rad.  so...i'm going back and getting one (hopefully) after i'm healed from rads.

 it's so hard for all of us at the beginning i think because we're all surprised with it.  when you have a baby, you can read books for 9 months about it while you're waiting, but when you find a lump all of the sudden or go for a general mammo and then its BAM cancer, I think we're little people just going "uh, hu, ok, whatever you say."  not that that's always bad either.

I read this thread the other night, and it made me think about my care choices, lessons learned, and how I agree that we should try to avoid guilt about past decisions or judgment about our decisions since most of us do the best that we can when we are diagnosed, with the information that we had at the time. I do believe that I might have made some decisions differently if I had the information I now possess, but that's really reflective of life in general. Of course, with breast cancer, decision making has some far-reaching consequences, which affect both quality and quantity of life.

I actually think of regrets in another way. Although I appreciate how I have been rather in tune with my body, which has led to early diagnosis of stage 1 breast ca two times as well as early detection of advanced breast cancer, I regret that I was not kinder, gentler, and more loving toward my body over the last 14 years (the time that has elapsed since my first diagnosis). I have expected my body to meet demands that were probably excessive, and I have not done enough to nurture it properly. Although I have not had the "typical" bad habits (those with the potential for harm, like smoking--and I am not trying to cause guilt for anyone here), I have not worked hard enough to develop my strength and endurance in positive ways AND to allow myself sufficient rest and ease with myself when not active in some way. Perhaps it is cancer time #3 that will help me to find more balance. (Here I am writing about balance again--oh well, I read somewhere that we just learn the same lessons over and over in our lives, sometimes in the same ways and sometimes in slightly different ways, until we get those lessons learned. I am glad to have that opportunity!)

When I developed a new primary in my other breast 18 months after mastectomy, one of the plastic surgeon's nurses quipped: "Don't you wish you'd had a bilateral in the first place?" I got very stern with her and said I'd made the right decision at the time, based on the info I had.

No regrets. (At least not yet!)

--CindyMN

After six months of chemo and being in the middle of my 30 radiation treatments for stage IIB IDC, I started noticing a slight rash on my breast (end of January 2009).  I was so blistered and burned from the radiation that I assumed it was also from the radiation and didn't think too much about it.  A month later, time for my mammogram and it was fine.  Rash still there, not changing too much but still there.  The thought of inflammatory breast cancer crossed my mind (April) but I still assumed it was a result of the radiation.  A month later, showed it to chemo nurses and they  called the oncologist and he said to go see my surgeon.  I did and she said probably from radiation.  I then saw my oncologist (early May) and he said the rash is probably not from radiation, but the swelling which I also had could be.  But, let's not just brush it off.   We'll check it again in two months. I then went to see my radation oncologist about a week later.  I figured that if anyone knew if it was radiation related, it would be him.  NO, he said.  Not radiation related but it couldn't possibly be IBC because it started during chemo and radiaiton.  He took pictures and told me to come back in two weeks and if no better or worse, we would biopsy it.  So, we biopsied it and it was IBC -- even though all three of my doctors thought it couldn't possibly be because it couldn't have started while on chemo and radiation.

My regret?? Wishing I had insisted on a biopsy when the thought of IBC first crossed my mind.  I believe that was in March and the biopsy wasn't until June.  As aggressive as IBC is, it spreads fast.  So far I am lucky.  All my PET/CTs, and MRIs show it has not spread.  Hope that continues to be the case.  But giving it several months to grow before starting new chemo could have been disastrous and I could have had mets going by that time.

Moral of the story ---- trust your gut.  Be your own advocate and push when things don't seem right.  I'm glad I didn't wait the two additional months my oncologist wanted before seeing me.  If that had been the case, I wouldn't have had a biopsy until another month or two later.  And, who knows.  That could have been enough time that it might have spread.

Sorry so long.

I just found this at the perfect time. My regret is letting my onco give me more Herceptin when my LVEF went to 49. I was near the end of treatment, problems almost always happen early in treatment;A 49 and a 50 are close and the test is not 100% accurate; blah,blah,blah.

I have had heart failure for a year and a half and nobody can tell me if my heart will get back to normal. I think the chances are 50/50. If it doesn't, the treatments that were supposed to improve my chances of 10 year survival from 70-90% have brought them down to 10%.

Major huge regret....went for mammo at out of network clinic, because first mammo was so miserable. Didn't really think or worry about it, how much could a mammo cost?

Since my dx was quick, I was so stunned and never asked about costs. I now have 6K lab bill. (mri pet pem ultra biopsy)

Big, huge, regret. Sloan was in network and 10 minutes from my house.

Feel like an idiot every day, they took my insurance card, and never asked for any payment, I thought oh...when you get cancer, they pay for everything!

 Ha!