If you had DCIS the first time.....

jjprice7611

Just curious regarding people who had DCIS the first time, if you had any type of recurrence or metastasis, what was the new diagnosis and how much time had passed between the DCIS and your recurrence/metastasis?

Almost one year ago (age 45), I was diagnosed with DCIS, grade 3, comedonecrosis, numerous microcalcifications, 1.8 cm, ER+ (6/8) / PR-, LCIS, large complex cyst, in my right breast. I underwent 2 lumpectomies to get clean margins, 3 nodes removed for sentinel node biopsy (0/3), cyst was removed. Did 35 rounds of radiation. BRCA - . Not menopausal at the time, but not a candidate for Tamoxifen due to previous stroke in my 20's, so had my ovaries removed in order to be postmenopausal to take AIs. Unfortunately, I cannot tolerate Aromatase Inhibitors so I am not taking any meds, but still enjoying the "lovely" side effects of my wham bam thank you ma'am menopause. My doc is putting my recurrence chance at 30%. I do not know if there is any connection or not, but I also had a high graded precancer of my cervix in my 20's. There is also a lot of family hx of all types of cancer (many extremely aggressive and fast growing), including people who had cervical precancer and then another unrelated cancer in the body diagnosed years later.

I have had issues since though: A 5 cm seroma they are monitoring, a sore near my areola, a rash on my nipple/areola, small amount of nipple discharge which crusts over. They have tried 2 types of oils for the rash, but no change. The sore they think is a stitch trying to work its way out. The seroma, they hope will be absorbed in time and/or is what is draining from nipple to cause crusting or they are also blaming the rash/crusting on the radiation which does not make since because I had the drainage and crusting right before I was originally diagnosed and has not gone away. In the back of my mind, I keep wondering about Paget's, but they do not think so yet and have waited to biopsy. They will probably biopsy when I go back in June though since last oil is still not working.

Since my surgeries, I had one mammo in January just on right breast and that showed odd things, so they did an ultrasound the same day. That is when I was diagnosed with the seroma. I go back in 2 weeks for my annual check of both sides.

I am not scared of it coming back, but just aware that it is a possibility. I must admit, I do have a "gut" feeling cancer is not done with me yet. So I wondering about others who had DCIS the first time and then re-diagnosed with cancer again; time frame and second diagnosis.

Thanks!

bevin

HI there, I am sorry you're struggling and know that someone with similar experience will be along soon. I suspect with Mothers day, the board were a bit quiet. wishing you well.

KBeee

I know you said you were BRCA negative. In the last year or so, they have been doing larger panel gene testing. With your extensive family history, perhaps you could get them to do it on you. In my case, since I had BMX, it would not have changed my treatment, so my doc would not order it. I wanted to know, so I paid out of pocket for a cheaper version and found out that my mom (who has had BC twice) and I share the same variant in the CHEK2 gene. If you find out that you do have a variant, you could potentially ask for more surveillance and/or explore other surgical options.

jjprice7611

Thanks Bevin and Karen. Yeah, the docs think there is some sort of gene mess up in our family, but they do not know what it is. Just in immediate or semi immediate family (blood relatives), there has been; leukemia, metastatic colon cancer, 2 different prostate cancers, metastatic renal cancer, metastatic ovarian cancer, mouth/throat cancer, melanoma, brain tumors, LCIS, 2 different cervical precancers (including me) and now my breast cancer. I feel like I am forgetting someone, but you get the idea. I do not think I had heard of CHEK2 gene, so thanks for that info! I know they wanted to test my mom for some type of gene mutation, but her colon cancer was so crazy aggressive, there just was not time. She only lived for 3 months after diagnosis and it was just insane how fast it grew, even after surgeries.

glennie19

I hope you can get a biopsy of your nipple/areola area and rule out Paget's at your app't in June. If you had draining & crusting before your diagnosis,,, then how can they say it is from the radiation?

Noni

I was dx with DCIS back in 2007. I tested negative for brca1 but had a strong family history. I also have a history of extreme anxiety and the initial dx was very hard on me. I opted for a bilateral mastectomy and never regretted my decision.

After my reconstruction I met with an oncologist about further follow up. At the time tamoxifen wasn't as readily prescribed, especially for those with bilateral mastectomies. So... I had no follow up at all.

8 years later I had what my pcp and I thought was bronchitis. It wouldn't go away no matter what we tried. She finally sent me for an xray which showed really, really bad news. I have no idea how long the various lesions and masses had been there. I kinda don't even want to think about it. But here I am mets to the bone, both lungs, and supra clavicle.

I have learned that post cancer, the patient has to be proactive and pay attention to their body. Those body aches, coughs that won't go away, and shortness of breath need a little extra attention.

Best of luck to you.

KBeee

Noni, Sorry you are dealing with this. Hoping the treatments knock it down for many, many years

farmerlucy

omg Noni - what a kick in the teeth. I'm with KBeee in wishing you many many years with your brainy girl.

jjprice7611

Thank you so much for opening your heart and sharing your story Noni, so that the rest of us can learn from your troubling situation. I truly hope that you are able to show cancer that YOU are the boss and in charge, not it!

Noni

Thanks ladies. Well wishes to you all

smilethrupain

Kbee, did you do an oncotype dx or mamma print test?