It's back... ugh...I'm in the 6%

[Karen502]

In 2003 I was diagnosed with DCIS in left breast when I was 44 ( pre-menopausal). I had a lumpectomy followed by 6 weeks of radiation therapy. No chemo. Attempted Tamoxifen, but I was allergic to it and since I was pre-menopause there was not an alternative. In 2011, I was diagnosed with ADH in my right breast, had a lumpectomy, no radiation. I have faithfully had annual mammograms every single year. At the end of January 2017 at the age of 58 now, I felt a difference ( a lump) in my left breast. Really? Could that be a lump? Are you sure? All these questions & insecurities popped in my head! Could it be that this difference is a common in radiated breasts as they age? Could it just be scar tissue from radiation 14 years ago? My mammogram was already scheduled for 2/14/17 (Valentines Day), so I didn't call the doc as it was just 14 days away. There is a question in bold letters when you register for your screening mammogram. It says have you noticed any change in your breast since your last mammogram? What should I do? Do I mark it yes? Again, was that really a lump I felt, or was it scar tissue? So, I didn't mark yes or no. They called me back and said..."Karen... you didn't answer the question?" I said I don't know how to answer it! So, they called a mammo tech to come back and talk to me. I explained my situation and my concerns and my insecurities at not knowing if it was truly a lump. Surely the mammo would alert us if there was a real concern. She said... we need to call your oncologist and get the orders changed from a screening mammo to a diagnostic mammo. Really? Can I take back what I told you? I've done it now. She replied..."no ma'am... you can't". So I had the diagnostic mammogram, followed by an ultrasound, followed by a biopsy. The biopsy revealed invasive mammory carcinoma in left breast. It is 9 mm in size and it is a malignant tumor. How can this be? I did everything I was told to do! I did the lumpectomy & radiation and I asked in 2003... should I have a mastectomy.... all my docs said "not recommended". In 2011... when I had the ore-cancer in my right breast.... I asked the docs... "should I have a double mastectomy now? This is scary to me each time I gat an abnormal mammogram. And they all said..."no"! Karen... the good thing is we are catching it on the mammograms before it becomes invasive. I said ok. I trusted them! Now, here I am a 3rd time, 14 years later from my 1st diagnosis, at 58 years old, and now I have a second primary cancer in my left radiated breast!!!!!! So, this morning I am off to have a Breast MRI, followed by an appointment with a plastic surgeon next week. I have already met with my oncologist who has done the BRACA gene mutation test. Results in 3 weeks. I have met with the breast surgeon yesterday. They don't know if it is in my lymph nodes yet. The oncologist said I fall in the 6% of people who have radiation who get a local reoccurrence. I am somewhat mad and scared and tired and disappointed because I feel like all the medical protocols, recommendations FAILED ME! I trusted you when you said..."Karen... the mammograms are catching this in the early stages." So my advice ... be persistent. Ask for the gene test to be done early because that is an important piece of information. I wish I had done that in 2003. I am waiting for the results on that test now. So... I am going to insist on a double mastectomy. This time... I am doing it my way!

[missa13]

Karen502 Karen, it's wonderful that you know exactly what you want and have finally gotten your medical team to cooperate. You're right-- you do have to be persistent, and while doctors are experts, patients know their body best! So go you Let us know how the test comes out, and how things continue to go with your docs...

[Karen502 in reply to missa13]

Thank you very much. I had MRI Weds. Test results revealed that cancer was only in left breast. Now on to meet plastic surgeon before surgery. Should I have reconstruction.? If so, what type? I am so overwhelmed! Surgeon says he and plastic surgeon will get their schedules together and schedule surgery within the next 2 weeks. Can we slow this down a little bit? Life changing decisions have to be made really quickly. Why is that? How does one really know if reconstruction is the best for yourself?.. would love to know how others made the decision to do immediate reconstruction or not. Please??????

[Feb14]

Karen, I think it's great that you are taking the bull by the reins and doing what you feel is best!

Sometimes even though you do all the right things and even the medical does too, things can go wrong. Most doctors don't want to put the patients through invasive surgeries or treatments if they can avoid it. I found out after my first breast cancer that am a BRCA 2 carrier so I was getting my annual MRI followed 6 months later by a sonogram and mammogram. Although they were keeping a very close look on me we found a mass on my other breast 6 months after I had my mammogram and sonogram, on my MRI. The cancer had gone into hiding behind my nipple and so I actually was diagnosed with Stage IIA and not an earlier stage. The breast cancers are 18 years apart. I went and got second opinions on everything and then determined what I had to do.

I've always been my own advocate and even for others but this also taught me that we can do everything right and things can still go wrong. I am glad that you are a good advocate for yourself and I hope all goes well for you. Keep advocating for yourself!

[Karen502 in reply to Feb14]

Thank you very much! I still trust my medical team. I was just so frustrated & scared that it came back. Mentally this is so brutal. The plan now is to have a bilateral mastectomy. Now I am inundated with decisions to be made....

[daf10]

Right on Sister Going with your gut feeling in this situation has been very beneficial No worries, nor regrets to cope with later

[Karen502 in reply to daf10]

Thank you. I may have sounded a little harsh when I first wrote the post. And it was because I just found out the cancer was back. I have calmed down and have a plan now.

[IleneW]

Hi Karen, I was also in that 6%, although no one told me it was that unusual. After getting stage 2 invasive cancer, I was diagnosed three years later with DCIS in the same exact place. The surgeon just removed the scar tissue and I switched from tamoxifen to an AI. No one could explain to me how that could happen and I was a wreck for a while. Finally I just said whatever...and nothing more has happened in that breast in 14 years.

By the way the difference between a screening mammo and a diagnostic is paperwork, coding, and maybe insurance payment. They do exactly the same mammogram.

A suggestion: if you are having reconstruction on a breast that has been irradiated, the skin will be thinner than it would have been. Make sure you are seeing a plastic surgeon who can handle it. I had a mole removed from the irradiated breast and it took a long time to heal.

Good luck!

[Karen502 in reply to IleneW]

Thank you so much! I see a plastic surgeon Thursday and that will definitely be a question that I have for him. Ho long was it from the time your breast was irradiated and the mole removed?

[daf10]

You have every right to be angry It is alright to vent. This is a safe place where you can express how you feel. We all understand So happy to hear that you have a plan

[urthmothr]

Since being diagnosed with first Paget Disease in my nipple, then DCIS, my mantra has been "peace of mind." I hope you will make the decision that will bring you the greatest peace of mind!