Anyone with small grade 2 DCIS opting out of treatment?

Khakitag

I didn’t take a friend’s advice and have a second opinion on my ADH diagnosis, opting to have the local gen surgeon do the excisional biopsy. When results came back 6mm DCIS grade 2, then I decided to get a second opinion at a breast center. Their pathologist asked for the slides, and determined it was larger (9 mm) and clear margins were less than recommended which puts me in the range for radiation recommendation. I am opposed to radiation and tamoxifen due to fear of side effects and how it will affect my quality of life. Anyone else with a similar diagnosis choosing to just watch and not treat?I don’t want to be a martyr, but I also don’t want to over treat something that only has a 20% risk of coming back.

Beesie

What about having re-excision surgery to widen the margins? I thought you were talking about that in another thread.

The thing with DCIS is that it can skip in the ducts, sometimes leaving a small space. So narrow margins could mean that there is more DCIS still in the breast, on the other side of that margin. Most likely not, but that's why rads is given - to kill off any of rogue DCIS cells that might be left in the breast. But with a relatively small non-high grade DCIS, achieving wider margins might be as effective as rads.

As for the 20% risk that it might come back, one thing to consider is that 50% of the time a DCIS recurrence is not found until the cells have already evolved to become an invasive cancer. So your 20% recurrence risk is a 10% risk to develop an invasive breast cancer. This change from DCIS to IDC happens at the molecular level of the cell, and is impossible to detect with imaging. And while we always hope that we will 'catch it early', unfortunately imaging techniques currently available are far from perfect, and even with a good monitoring program, sometimes a recurrence is not caught early.

The other thing to consider is that having been diagnosed with DCIS, you now have about double the risk of the average women to be diagnosed again with breast cancer, not a recurrence but a new primary breast cancer that could develop in either breast. "Double the risk" is what my MO told me; the research I've seen isn't consistent but overall seems to support that, with some studies suggesting a lower risk and other studies suggesting a higher risk. Tamoxifen would not only drop your 20% recurrence risk down to about 10%, but it would also reduce your risk to develop a new primary. I notice in another thread that you mention that you are 48. The average 48 year old has approximately an 11% remaining lifetime risk to be diagnosed with breast cancer. So this means that your risk is probably closer to 22%. For the years that you take Tamoxifen, and for a period of time afterwards, Tamoxifen can cut this risk by more than 1/2. That's not an insignificant benefit.

That's not to suggest that you should take Tamoxifen, but only to say that you shouldn't let your fear of side effects stop you from considering the benefits. The decision you make should not just be based only on your fear of side effects and concerns about quality of life (which are certainly legitimate concerns), but on a more balanced consideration of the benefits vs. the risks. An invasive recurrence or a new invasive breast cancer also comes with lots of side effects (including risk of death) and sure blows up quality of life, at least for a while.

There is a lot in the media these days about "the over-treatment of DCIS". This is a valid concern. The problem is that DCIS comes in all shapes and sizes. Diagnoses range from 2mm of grade 1 DCIS to 8cm of grade 3 DCIS (mine was the latter, plus I had a microinvasion of IDC). Medically speaking, those two diagnoses don't warrant the same treatment. Treating these two diagnoses the same could certainly be considered over-treatment for one diagnosis or under-treatment for the other. Your diagnosis is very favorable, but it falls a bit in the middle. Almost 1cm, grade 2. Concerns about over-treatment are valid, but the impact of under-treatment could be more significant. What you want is the optimal treatment for your specific diagnosis. And to decide on that, you need to put your fears aside and look at the facts, both about your diagnosis and the associated risks, and about the different treatment options you face. Then you can make the decision that is right for you, a decision that gives you a risk level - either from the treatment or for the disease - that you can live with.

And maybe this will help. When I was making my decisions, I found it hard to decide which option I liked best, because I didn't like any of them. So I flipped it around. I made my decisions based on which option I would regret the least, if things didn't work out as planned. If I ran into problems down the road, with which decision was I more likely to say "I made the best decision I could with the information that I had" versus saying "I really wish I'd done the other thing"?

Khakitag

Bessie: thanks for the encouragement. I had been taking testosterone pellets to help deal with perimenopausal symptoms before this diagnosis, and from what I’ve been reading, the tamoxifen has the same SE I was trying to treat with the testosterone.

As far as re excision, my tumor board discussed it, and felt comfortable not doing it ( assuming, I think, that I agree to the rads). The prob with re excision is also, the tissue wasn’t marked w different colored ink oriented in my breast (thank you gen surgeon) so the whole cavity would have to be re excised again rather than just the margin that needed it I’m learning from my mistakes. I have a lot of questions to ask the med onc when I see her next week with one being my actual risk including my moms hx of ca. I can’t seem to find any risk stats that I feel fit my picture. Thanks for giving me more to think about. I may ( hopefully) feel better about giving tamoxifen at least a trial period after talking to the med onc.

MinusTwo

Khat - I'm not hormone plus, so I can't discuss that. But from what I've read, those SEs are much worse than radiation - and last for 5 years. I had rads every day for 5 weeks. The longest & hardest part was getting there & getting changed. Otherwise the 'zap' was a snap. I was very tired by the end of 25 sessions, but my skin held up with no problems. Other than the general fact of radiation itself and the radiated side being higher & tighter, I was glad I did rads.

at6sand7s

Khakitag--I am also considering a "less is more" approach. I haven't made a decision yet---still doing research.

Khakitag

at6sand7s:

I just cannot get my mind wrapped around willingly subjecting myself to the horrible side effects I’ve been reading about. Maybe I’m being stupid, but at least my husband is on board with me, and that helps a ton. What is your diagnosis

edj3

My dx is different than yours (IDC, not DCIS) but thought it might be useful to hear from others who had similar concerns.

I did have radiation. The radiation side effects weren't terrible but I did/do have some--mostly muscle tightness which is still with me, and fatigue which is gone. My skin did fine during and after treatment.

I have refused tamoxifen. Well more accurately, I reluctantly tried it for three weeks at half dose, and had an unusual side effect that impacted my running (very dedicated to my running). So I stopped and all is well there.

Khakitag

Edj3: thanks for your reply. I’ve read some of your other posts and it appears you’ve dealt with much more than I have. So sorry you've had all those troubles. I used to run, did a marathon and a few halfs but due to severe knee arthritis, I had to find other forms of exercise. Weight lifting and staying fit is very important to me. So is my sex life. I fear that tamoxifen will take all that away from me. I’m going to consider rads, but I think I’d rather risk my 20% chance of ca coming back, than load myself down with symptoms that could be life altering.

edj3

Khakitag I totally understand. I had deep, deep reservations about tamoxifen and the common side effects/complications. I was not at all expecting the heart rate issues I experienced, or that it would take six weeks for all that to go away once I stopped taking the drug.

At the risk of sounds sanctimonious, everyone's got their own path to figure out. For me, good quality of life means I can do all the fitness stuff I love and live an active life. Tamoxifen was clearly going to stop that--it's not safe to run when your heart spikes to 189 in the first 30 seconds of a run.

For someone else, doing everything possible to avoid breast cancer recurring is the top priority.

Should either of my cancers return, you bet I'll be sad. But no regrets, I'm living fully now and won't stop until my body says otherwise.