Those who did strict screening and were diagnosed with BC

Oddball1 · June 2010

Hi Ladies....I am signed up to have a PBM and I would love input from you all who have been diagnosed with cancer. I am 38 and I have BRCA1+. ( My mom at 33 and grandma in 40's had agressive breast cancer.) I understand that treatments has come a long way and that screening has improved dramatically, especially with MRI. However, some say screening still misses some tumors. My questions are for those who were doing regular screening because you knew you had the gene or a stong family history. Did you skip screening and then get diagnosed or were you going by the strict schedule? When you were diagnosed....how was your cancer treated? Chemo or not?? Just surgery or lumpectomy and raditation? Would you recommend a PBM for a woman with perfectly healthy breasts?? How good was early detection for you in other words??

killertatas · June 2010

I have a strong family history but didn't test + for BRCA. I was 33 and was on a 6 month ultrasound and mammo schedule with a breast specialist/oncologist. I was checked in Dec. 07 and tests showed nothing remarkable. I felt a lump in my right breast in June 08, had an ultrasound 2 weeks later. The dr. didn't think it looked suspicious. The ultrasound tech convinced him to do mammo. and he still was not convinced. Did a biopsy and it came back invasive/infiltrating lobular carcinoma. Did lumpectomy of that tumor and in the margins showed DCIS tumor. Did another lumpectomy to get clear margins from the DCIS. Path revealed more DCIS, so I made the hard choice to do a bilat mast with tissue exp recon. Good thing: My right AND left breast showed DCIS throughout. Didn't do chemo because it was stage 1. I'm on Tamoxifen for 7 years.

I think women MUST be proactive. Had I not been so acutely aware of my breasts, I wouldn't have found it so early.

wyldblumusic · June 2010

Hello.

Those are great questions. I recently had the BRCA test done, and I did ALOT of thinking about what I would do if the results were positive. The results were negative.

I have a strong family history of BC. Because of this history, my doctor starting screening mamms when I was 35. I was not perfect with the screening schedule, but I was close. I was diagnosed with DCIS at 39. I had a lumpectomy and radiation and am currently deciding on Tamoxifen. The other women in my family who have had BC have survived and are still doing well.

So, screening worked well for me. Because of my experience and the experience of my family, I am not yet thinking about a PBM. I may change my mind in the future.

I think that we all need to follow our hearts about this decision. It is so very personnal. If the experience of my family were even a slight bit different, I might have come to an entirely different decision. I say...follow your instincts.

Wishing you peace and comfort with your decision.

CandDsMom · June 2010

I had a somewhat strong family history (paternal aunt at 28, paternal great aunts x 3 but postmenopausal). I started screening at 32yo. Missed last year due to pregnancy. Had repeat screening in 2/10 which showed some small microcysts (3mm and 7mm) and some indeterminate calcifications in right upper outer quadrant. Radiologist brushed this off - felt that it was due to recent breastfeeding (weaned my son 11/09). I got the BIRADS-3 label (come back in 6 months).

I didn't feel comfortable with this and self referred to BS, insisted on biopsy and low and behold DCIS in both microcysts which everyone was shocked by (including me since everyone said it was fine!!) MRI subsequently revealed "surprise" 8x7 cm area in right upper outer quadrant that was full of small foci of DCIS. My MX path showed DCIS in 6 spots all <5mm. Interestingly, left breast (prophy side) was read as normal by my NCI facility in Chicago. I sent my stuff to Mayo for 2nd opinion and they found focal epithelial columnar cell abnormalities there too (this is thought to be the very earliest changes of breast dysplasia/carcinoma). So I am very glad I did the BMX with left prophy. FYI I am BRCA negative but oncologist thinks I have something that we probably just don't know how to test for yet.

I guess I lost faith not so much in the screening, but in the Drs who decided what to do with the screening - I am pretty upset that I was put into the BIRADS 3 category back in 2/10. I read something about BIRADS 3 category along the way - basically they will put you in this category (risk <2% of lesion being cancer which they also don't tell you that is the definition of BIRADS-3) with the thought being that even if there is a 6 or 12 month delay in diagnosis that it doesn't change the mortality rate since women with more aggressive tumors that would have grown so much in 6 or 12 months are more likely to die anyway. To see such a cold calculation about my life and the lives of other women I just about vomited when I read that I have to say.

Anyway I digress, I have heard about something called PEM - positron emission mammography - which is supposed to be the new latest and greatest screening option with fewer false positives than MRI and a better resolution rate (can see lesions less than 5mm size). I think this is still being studied however and isn't available to the general population.

Unfortunately as you know there are no guarantees, I hope with all my heart that this sacrifice will be enough to keep me here for my 2 babies (1 and 3) and family. I am troubled about the whole no further screening after BMX - I feel like the general idea there is no data = do nothing.

Recently though there was a study by Esserman et al in 1/10 looking at value of MRI and mammogram after TRAM/DIEP/GAP/etc for early stage women looking for chest wall recurrence (apparently with TE/implants everything is more in front and can be more easily palpated so that is why no screening is generally recommended for these patients). Anyway, there was value to mammogram (they thought MRI was valuable too but not cost effective thus they didn't recommend it). Of note, Dr Esserman is not my favorite - she is an advocate of mammograms starting at age 50 and also espouses the whole "DCIS is precancer" opinion which is frustrating but I am at least going to insist on a baseline post-operative MRI and routine screening now that I am post free TRAM.

Take care, and good luck with your decision...

kad22 · July 2010

Hi I am 37 and was diagnosed in Feb 2010. I have the BRCA1 gene was tested when I was around 30. My mom had overian and breast cancer in her early 40s her twin passed away after BC metatisized by age of 40. Mom passed away 5yrs ago from Lukemia.

I was on a 6m mammo, 6m MRI schedule. It is lucky that I stuck to doing the MRIs even though I hated them! Within one yr a tumor grew to 2cm and was only found because of the MRIs! No one felt it or saw it on the Mammo or ultrasound.

Because of family history and my gene I chose to have a BLM in Feb. w/ reconstructive surgery. I just didn't want to have to worry anymore about having to have biopsies performed. Right now I am doing a 6m treatment of chemo because of being triple neg. I had 4dd of AC and am now on my 3rd taxol of 12! No rads because of no lymph node invovlement which I thank to early detection and my going to those MRIs! Triple neg means no meds for me after chemo so I pray it works!

I just think that if I didn't go to this last MRI the tumor would still be growing in me and no one would find it becasue it was so weird and soft. They saw it on the MRI with having a comparsion one to look at one yr. before. I thank the lord that I went and my family dr would only renew my prescriptions for a 3m time period so that I would have to see her again and tell her how my MRI went before giving me more meds - which now I am off of!! ;-)

You have to decide with you in mind not others - what feels right to you. Take advice from doctors and others but in the end your heart will tell you what you should do. Best of luck to you and hope to hear what your decision is. (( HUGS))

Kelli

Those who did strict screening and were diagnosed with BC

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