No Further treatment after UMX. Happy but Worried.

aussierockchick

I would really appreciate some advice from your incredibly knowledgeable members. I have seriously found answers here that hours of trawling through medical journals hasn't been able to provide so thank you for that. My DCIS was huge but couldn't be seen on mammogram or ultrasound as I have very dense breasts. It was picked up on mammogram as two small areas of calcifications, 30mm apart, which they didn't even think looked particularly suspicious. The doctors in the breast clinic seemed genuinely shaken when the biopsies came back as high grade DCIS. I was booked in for a lumpectomy but insisted on an MRI . Shockingly, The DCIS was 90mm on MRI but ended up on final pathology being 70mm extended through the two lower quadrants of the breast . So the MRI did overestimate, but the treatment would have been the same. I am (was) DD cup but they said it wouldn't be possible to remove the area and necessary margins with an acceptable result. My DCIS had every nasty characteristic and I was not given a choice, mastectomy was my only option. Being in Australia with an outdoor lifestyle and lap swimming as my chosen sport, an immediate reconstruction was absolutely necessary to me. The thought of losing my breast was seriously traumatizing and having prophylactic removal of the other breast was never suggested and I would have fought tooth and nail against that idea. I had skin sparing right MX done 3 weeks ago by a plastic surgeon, so there is only a small scar, but they would not save the nipple due to the size and grade of the DCIS. I have an air expander in place which is a little uncomfortable but not exactly painful and I'm recovering really well. I haven't really started inflating it yet as I'm waiting for the scar to heal more. Apparently I need 600cc in it and I'm at 230cc which gives me a promising little cleavage.

My DCIS was high grade with comedonecrosis, solid and cribform, the 2 areas of malignant calcifications, and my estrogen scores were really high 3+ in 80% of cells . Pr was negative. Her wasn't tested. Margins were clear but the deep margin, which is the chest wall was only 1mm. My nodes were clear and no invasive cancer was found. WHEW!!!! This is one of the confusing things about DCIS, that I can have an area that big and high grade with no invasion, yet others can have a tiny low grade area that has become invasive. Or anything in between. There is no rhyme or reason to this condition. And you don't get the full picture till it's out, which is really scary, when they are saying you have to lose your breast, but there's no definite proof why, until the breast is gone and final pathology done. Turns out it was justified, but I really wasnt convinced, even as I lay on the operating table waiting to go under, I was sure there had been a mistake.

At my first follow up appointment last week, I was very surprised when they said that I needed no further treatment. I am worried that if I have a recurrence, chances are that could also grow huge before it is seen. I am only 53. I am in perimenopause, I haven't had a period for 3 months, but that has been my pattern for the last few years. Incidentally a strange side effect after surgery, I have had really strong body odour under both armpits every single day, strange for me as I haven't had to wear deodorant for at least the last 15 years or so?? So it feels like my hormones are in overdrive.

I am pretty nervous about going through this again, especially as everything I read tells me 50% of recurrences will be an invasive cancer. I was expecting that they might want to do radiation on my chest wall because of the margin only being 1mm. Not that I wanted it, and from reconstruction point of view I was relieved I didn't have to have it, but from what I had read 2mm was the safe margin for the chest wall and I just thought they might want to err on the side of caution.

And then, seeing my high estrogen uptake, I was prepared to be told that Tamoxifen would be useful for me to minimize chance of recurrence in the opposite breast. Once again I was scared of the side effects and Im glad I don't have to have it, but everything I read made me think that they might suggest it. But they decided at their multidisciplinary team meeting in a major Womens Hospital, that I didn't need any more treatment. They didn't even raise the subject or give me the option of taking Tamox, So I'm kind of wondering if this makes sense. I feel a bit worried that nothing is being done to prevent further cancer. I am very healthy and fit, with a bmi of 25, and a long list of lifestyle and dietary behaviours that were supposed to lower my risk of cancer. But obviously didn't. I was one of teh few women taht loved my body adn ws very happy with my breasts the way they were, tho I do admit the left one does look a little folorn now without its twin.

My mother warned me years ago she took DES which is an estrogen drug that was taken to stop miscarriages, when she was pregnant with me back in the 60's. So far I have had an ectopic pregnancy, high grade cervical dysplasia, and now breast cancer which are all documented side effects that have been observed in the daughters of women who took this drug. Increased rates of vaginal and ovarian cancers are another documented side effect of DES, and uterine cancer risk is higher for women that take Tamoxifen, so I am probably better off without it. I have had ovarian cysts and uterine polyps in the past, but nothing nasty.

But just wondering if others have been offered no further treatment after UMX. And why this would be so, given the extent and aggressive characterisitics of my DCIS.

One more question. I am going to have a silicon implant on the RHS. Hopefully I will be all done before our summer . I wonder if anyone else who has had a single silicon implant can tell me how it matches up to the other side. Did you get a good result? As I said I have a dense D-DD breast on the other side teardrop shaped. Initially I was told I am too large for an implant, but then he said he can do it after all. Apparently I don't have enough abdominal tissue for a diep that size. Thanks, any advice welcome. Im short on data so if I take time to reply that will be why.

Cheers, Valerie

Moderators

Dear Valerie - We just wanted to welcome you to Breastcancer.org, and let you know that we're so glad you've found our community.

As you can read in our main site " You and your doctor will consider the Recurrence Score in combination with other factors, such as the size and grade of the DCIS, whether or not the DCIS is hormone-receptor-positive, and your age." More information on Treatments for DCIS in our main site (just click on the link).

We're glad you've decided to post. Ladies here may be able to help you and share their personal experiences and support, so we hope you get responses soon!

Best wishes! Let us know how you're doing.

The Mods

Beesie

Mods, the information you referred to is specific to using the Oncotype score as part of the decision criteria for those who have a lumpectomy. aussierockchick had a MX. According to the Oncotype website and their materials, the Oncotype DX test for DCIS is not available for women who've had a MX.

aussierockchick, your diagnosis and treatment sounds almost identical to mine. Same size DCIS, two different areas of DCIS, high grade with comedonecrosis, single MX. The only differences were that my close 1mm margin was at the skin rather than the chest wall, and I did have a micronvasion of IDC in addition to all that DCIS - so my diagnosis was actually Stage I, DCIS-Mi. I was 49 at time of diagnosis, so a bit younger than you.

Like you, I was not offered any other treatment, although my oncologist did discuss the option of taking Tamoxifen as protection for my remaining breast. He actually recommended against it but would have prescribed it if I wanted. After much research, I end up agreeing with him. That was 11 1/2 years ago. So far, so good.

Over my years on this board, I'd say it's about 50/50 in terms of women with DCIS who have a single MX who end up deciding to take Tamoxifen vs. those who don't. It really is a choice, so if this is something you would feel more comfortable doing, particularly since your contralateral risk might be higher than average (due to your mother having taken DES when she was pregnant with you), this is something you should discuss further with your oncologist. The position you can take is not that you are looking to take the Tamoxifen because of your current diagnosis (which treatment guidelines would say doesn't warrant further treatment after the MX) but because you are high risk to be diagnosed with another breast cancer in your remaining breast. This would not be a recurrence, but a new primary breast cancer. The fact that you have the DES history, and now a personal history of breast cancer, is what might warrant Tamoxifen as a preventative measure to address your high risk status.

Hope that helps.

MTwoman

Valerie,

You are correct that women with ER+ DCIS that is treated by mx, in the US, would most likely have Tamoxifen recommended; in your case it may have to do with the DES and possible additional risks? In my case, I had umx (because of mulit-focal dcis) and reconstruction surgeries, and then was done. I was triple neg, so endocrine therapy wouldn't have been helpful. It is also not typical to use rads after mx in the US. I do understand the feeling of unease when you're told "that's it" for your treatment. Has your team gone through your personal risk/benefits of further treatment with you? It sounds like they met, discussed your particulars to come to that conclusion, but maybe didn't give you the details? I would schedule a final consult with my provider and get a better understanding of what the risks vs benefits are, as well as a good follow up schedule. (you should get a chance to understand why they aren't recommending rads for your close margin, or tamox for your ER+) Here, typically, women are seen every 6 months for a couple of years before going back to an annual schedule. As you have dense breasts, it might be beneficial to either rotate mammo and mri or get 3D mammos. I'd talk to your team about that as well.

As for the umx recontruction questions. I have a saline implant as I had my surgery many years ago and the silicon ones were not what they are today. I was 38, so it was important for me to "match". I did at the time, but I will say that over time that has changed. I have been 14 years NED, so I will not be complaining about that.

kalenji

When I had my first mammo/ultrasound, there were suspicious microcals in the upper outer quadrant of my right breast. The radiologist asked me to return a year later for another check. I thought all was well. A year later, they took a more serious look into that area, and asked me to do a biopsy, which showed DCIS. My breast surgeon recommended a mastectomy as he felt it was likely extensive. I was totally shocked. I was 45. In good shape. Prime of my life. I was angry why they didn't detect it a year ago, I might have saved my breast from mastectomy. There was also a period of asking 'why me'. I was so much fitter and slimmer than my mom and sis who didn't have this. I was angry that medical science was not advanced enough to know who would or would not develop invasive cancer from dcis, and that it had to be treated with a mastectomy in my case for something that might not develop into invasive cancer.

My breast surgeon was right that the DCIS was extensive - half my breast. The deep margin against my chest wall was 1mm. That was considered clean margin. I didn't have recon, so I can see and feel how close the surgery went against my chest wall. My ribs are showing through the skin in place of my removed breast. It is so close that I sometimes wondered if he had removed my pectoral muscles too.

On follow up I was told no further treatment needed. I was >90%ER+, DCIS with comedonecrosis intermediate grade. I'm not from the USA, My doctors are not the type who would prescribe something for no good medical reason.I thought about tamoxifen, but since I would not want to take it, why raise it and trouble myself. Of cos I fret that some dcis cells might have remained, but I'll take my chances that my surgeon did a good job. I'm more worried about my remaining breast, which I have to do active monitoring. I sometimes stress over my upcoming mammo in a few months time. I hope I don't have to go through this again. But no one really knows until then. So I've learnt to deal with it when it comes.

That's my story. Everyone is different, but hope it helps as a reference.

TrmTab

Hi Aussie

I was 54 and perimenipausal at time of DX. (Only 55 now, but it feels like a lifetime ago) Two lumpectomies without clear margins, meant I joined the UMX club! By the time all my LX surgeries had taken place and the decision was to wait 4 months between last LX and the MX, it had been 10 months since my last period...so still technically perimenipause but I was put on Arimidex as a way to halt further progression of the DCIS until surgery. Post surgery I was told to continue to take Arimidex as a way to be proactive against a new occurrance on my remaining natural breast.

So no rads or chemo, but MX and Arimidex for 5 years...

You can take a blood test to determine if you are still in Tomox or should go to Arimidex

aussierockchick

Omg. I just had a long reply typed when my phone updated and deleted the entire thing . We are backward down under. Ha ha. Basically it thanked you all for your responses. Its reassuring to hear from ladies with similar diagnosis and also no further treatment. It seems to me that no matter what choices we make in terms of treatments lifestyle or whatever else the fact of having ever had breasts means some element of risk will always be there. We can minimise it but nothing is 100% Sorry we are all here. My days of thinking of breast cancer as one definitive condition are well and truly over. So many variations within variations. Seems like a long time ago i had never even heard of dcis but it was only just this year. Xx