No rads after grade 3 lumpectomy

Tadykins - while my situation is not identical to yours, I also had and tiny area (1.6 mm) of DCIS removed eight years ago and did NOT choose to follow it with radiation. Here is my DCIS 'story' - I had my diagnosis of DCIS back in July, 2008 -- left breast -- after a digital mamm which showed a cluster of microcalcifications followed by a lumpectomy/surgical excision. As mentioned above, mine was a very small focus area of DCIS (1.6 mm) with nothing identified as comedo (path report indicated solid & cribriform) NO necrosis present, considered intermediate grade, and I had clear margins after the surgical excision/lumpectomy. I have not had any additional treatment besides my excisional biopsy/surgical excision in July '08 which got that tiny area of DCIS out. At follow up appt. a week after that biopsy, a medical oncologist spoke with me and told me that my tumor was so tiny he thought there was a miniscule chance it would cause me problems down the road and he did not recommend radiation therapy or hormonal therapy with their associated risks and side effects for my particular situation. He actually told me I was not to lose sleep over this or worry about it and he never expected to see me again. I also met with a radiation oncologist who wavered a bit on his recommendation, (seems I was sort of in a 'gray' area on rad treatments mainly because of my age at that time - 46 - and one margin although clear was quite 'close' at 1.3 mm) but ultimately told me after we had a long discussion that I get a 'pass'. Therefore, I decided against doing anything more except for close monitoring with mammograms and MRI's as needed.I have had two additional biopsies since the initial diagnosis of that tiny area of DCIS. In summer of 2011 microcalc's were again found in that same left breast and I endured another excisional biopsy which indicated all benign conditions. In July 2012 a small grouping of microcalc's (less than ten) were again showing up in left breast on mamm and I had a stereotactic biopsy to remove the majority of them which also came back benign. They put a 'marker' in at the time of stereo biopsy and I have had follow up mamm's since then which thankfully continue to be 'stable' in that area. This past July I had my first 3D mammogram and still received report of 'stable' - I am at the point now, eight years since first lumpectomy/surgical excision, of being back to annual checks. My DCIS was a very, very tiny area, but I did not choose to do radiation or any further treatment.

Tadykins - I think it might always be somewhat in the 'back of your mind' although as the years go on, not quite as much. I still get a bit nervous when it is time for that annual mammogram, but just always forewarn my family I might be a bit 'out of sorts' . . . I'm sure you will probably be on the six month mammogram routine for a little while which should help keep an eye on things. Good luck!

I was recently diagnosed with DCIS, grade 1, and I was referred to a radiation oncologist after my lumpectomy. She told me about the two largest studies on DCIS, what the risks there are with radiation treatment (although rare, possible heart damage and lung cancer down the road) and then left it up to me to decide. She said that for my situation the stats are as follows: 96% chance it won't recur with radiation, 90% it won't recur with no radiation. I opted for no radiation. She seemed pleased with my decision and said that they'd be on top of it if it came back. As I'm being followed at a major cancer centre, I trust their judgement and expertise. Like she said, everyone's tolerance for risk is different....some people want to throw the kitchen sink at it and others are willing to take a more laid back approach. I'm not overly concerned. My margins were good: 4 mm and 5mm and there was no comedo activity. She said that 1 cm. margins are optimal but it's difficult to get that without causing cosmetic problems with the breast. I reckon the odds are in our favour on this one and with a bit of luck we won't have to deal with this again in the future. Good luck to you!

Tadykins, that's how I interpreted the research also. I would want to know my margin width so I would have a better idea of my risk of recurrence. If you found out that your margin was >1cm, what would you do? Is it worth going through radiation treatment to reduce your recurrence risk from 16% to 10%? Those numbers are statistically different, but it might not be worth it to you. Notice also that nuclear grade is not addressed in this summary, and grade 3 is usually treated more seriously than grade 1. The classification of margins between 2mm and 10mm is fairly broad. How would those recurrence rates change if that classification was 2-5mm and 5+mm? They didn't have enough data to estimate recurrence this way, so there is not enough information to determine what a reasonable cutoff is. If you look at the recurrence rates after radiation for all three negative margin classes, the recurrence rates are very similar (12%, 13%, and 10%). Radiation is definitely effective! For me, I think I would rest easy with margins >1cm. You might want to get a second opinion to ease your mind. There has been a lot of press about the overtreatment of DCIS, but so many of those discussions don't mention nuclear grade which is very important. If your radiologist has a personal opinion about DCIS overtreatment that doesn't match your risk tolerance, maybe you should consult with a different radiologist.

Tadykins, it may be a good idea to get a second opinion to put your mind at rest. It may be that the decision not to have radiotherapy is because the risk/ benefit analysis on such a tiny tumour means you are safer not having it. And it's worth remembering, if anything ever did recur, you can have radiotherapy next time. DCIS if it recurs is DCIS again 50% of the time. If mine recurs it will have to be a mastectomy. You still have an weapon in reserve.

My mammogram interval is yearly for the first 5 years and every 18 months for the next 6, then it's back to 3 years. It does make me nervous.

I would get an appointment to talk this over with your oncology team because it could make you feel happier that this was the right decision, or they may be able to talk about other options. Is it definitely too late to have rads? The chemo girls have rads way down the line after surgery.

Dizzybee, that's great that you got large clear margins with such a large area of DCIS. I had involved margins with both lumpectomies and had to have MX to deal with it. In my second lumpectomy, one of the margins that had been assessed as clear in the first lumpectomy was involved in the second lumpectomy. It seems that DCIS can have "skips" in the ducts so it's not necessarily continuous throughout. I think that this is one of the reason that radiation is so effective in lowering recurrence rates. Note that even in the clear margin category of the study, the radiation treatment was associated with a reduction of the recurrence risk from 1-in-6 to 1-in-10. That effect is statistically significant based on the p-value of the test of the hazard ratio. Certainly we all have to determine how that measures against our own risk threshold.

LAStar and Barred Owl

Ever since I got diagnosed not very long ago, I've struggled with the statistics. As someone who was never any good at math, I don't feel confident that I understand when the figures are bandied around. So there is a conflict between wanting to be well-informed, and feeling I don't have the training or understanding to challenge the experts when it comes to decision making. But it seems like most of the decisions are around statistical risk reduction. Rads will reduce the risk of recurrence by this much, and Tamoxifen by this much more. So in the end I guess I will assume that the oncologist knows his/her stuff and follow their recommendations.

But it is great to come here and find the links to the studies and women who are much better able than me to understand them. But if I've got this right, Barred Owl's meta study is mostly not in agreement with the first study, it is saying that once you get the optimum margin of 2 millimeters there's little evidence of any greater benefit from bigger margins. That's a bit of a shame since I think I have probably have very big margins now! The pathology report gives the biggest dimension as 95 millimeters for my 5 centimetre tumour. But that was after re excision as the first time round had margins of half a millimeter on two sides.

LAStar, yes, I think my surgeon was also amazed the new sample came back clear, we'd agreed it would have to be mx if it wasn't. The original sample showed a multifocal solid tumour with comedo necrosis, but no microinvasion, but I was thinking maybe they'd find either microinvasion or full IDC.

And I even have a good shape, due to some neat oncoplastic lift and reduction surgery, which is probably why I have such good margins, the surgeon said redoing it would be difficult after it had all been moved around.

Hi Tadykins:

You didn't mention the estrogen receptor (ER) or progesterone receptor (PR) status of your DCIS. If your DCIS was hormone receptor-positive (ER+ and/or PR+), then you would have the additional option of endocrine therapy (i.e., a type of anti-hormonal treatment). Endocrine therapy can reduce the risk of second events (of DCIS or invasive breast cancer) in the same or opposite breast. If you had hormone receptor-positive disease and have not yet consulted with a "medical oncologist", you may wish to request a referral and appointment with a medical oncologist as soon as possible to discuss the potential benefits and risks of endocrine therapy in your particular case. Endocrine therapy could be tamoxifen (pre-menopausal or post-menopausal). If post-menopausal, you would have the additional option of an aromatase inhibitor. If you elect endocrine therapy, it would be preferable to initiate it as soon as feasible.

BarredOwl

Hi Tadykins:

Please do not hesitate to call your surgeon and inquire about your ER and PR status, based on the biopsy or surgical pathology report. As best practice for patients, I would also recommend that you (and all patients) request copies of the pathology reports from all biopsies and surgeries for your review and records.

The pathology reports (including any addenda and supplements) should include information about any ER and PR testing that was done on your tissue. The purpose of obtaining these reports is not to second-guess your decision about radiation (which was made on the advice of a professional with full knowledge of applicable clinical and pathologic factors of your case).

The goal of these steps would be for you to learn additional details of your diagnosis, and to find out whether you may have another risk-reducing option available to you (i.e., endocrine therapy). If the DCIS was hormone receptor-positive (ER+ and/or PR+), then you may choose to consult a medical oncologist about the option of endocrine therapy and whether it is right for you or not. This would enable you to make an informed decision about it (regardless or whether you elect or decline it).

I do not think the window for initiating endocrine therapy has closed, but the process of inquiring about ER and PR status and seeking consultation about endocrine therapy should be initiated at this time and not deferred, if of interest.

BarredOwl

BarredOwl, thanks for the information. I guess if I have problems with Tamoxifen and want to transfer to AIs it will be useful to bring to the discussion. As ever, it's a case of weighing up the side effects, do I want increased risk of heart disease, stroke and DVT or joint and muscle pain? At the moment I'm hoping for the best that Tamoxifen will suit me, but it's good to know there is something else out there if there is a problem.

There is so much detailed information on these boards, thanks for bringing it to the table for the rest of us!