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DCIS do I really need an AI?
Non-invasive DCIS grade 2 lumpectomy clear margins 3 mm in size. Decision RT says no- radiation side effects outweigh the benefits. Do I really need an AI? Does anybody know the recurrence rates if I do nothing further? I can’t seem to get a straight answer. I have osteopenia so I’m not too thrilled about going on an AI and then of course the other side effects like cardiac, bone pain hair loss neurological issues etc. Everyone keeps saying you don’t have cancer its just DCIS low chance of recurring so why the treatment overkill? The more I read the more confused I get. I’m 64 and thought I was in perfect health until I had the dexa and mammo. Any thoughts would be appreciated!
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@triciaot
Oh yeah and my DCIS was 3cm. Surgeon said she removed about the size of a lemon during my lumpectomy but then I also had to go back and have a
re-excision after that because my margins weren’t clear enough.
My understanding is that necrosis is the dead cells; they can see the cell “trash”. In normal cell death process (apoptosis) our bodies work to absorb the dead cell trash. When cancer cells are multiplying quickly the body can’t absorb the dead stuff fast enough. So necrosis is a sign of cancer cell proliferation (again, this is my unprofessional opinion of what I’ve read and been told/remember from the oncologist/radiologist). Cancer cells are drawn to an environment where they can survive. When necrosis builds up, it’s pushed to the middle of the duct and the live cancer cells start seeking more space to replicate - which can eventually push outside the duct (my explanation). Technically - I think comedo defines a large grouping or bump (like in dermatology) so comedonecrosis is a large bump of dead cells.
Miotic rate is part of their decision making to determine a cancer grade. We don’t see that number. But to grade your biopsy tissue they HAD to consider miotic rate. And it tells them how fast the cells are replicating. To me, if the cancer is growing fast it puts me at a higher risk of metastasis.
If you’re going to ask about the miotic rate, you’d probably want to know if a person or machine did the counting, and whether they only counted a small sample. Small sampling can give inconsistent results because it may not be a good example of the cancer, they may have just randomly picked a small sample that only had slow growing cells but other faster growing cells would have been seen in another sample. Counting an entire slice of the cancer is reported to be very tedious and time consuming - that equates to $$ and extra staff. I think the computerized version to count is getting more accurate (AI or machine learning) but in the recent past the computer wasn’t as accurate determining which cells to count or to exclude.
Sorry this is so long - I read a lot of research and can get way too detailed when answering. Tamoxifen comments in next post.
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7 ReactionsMy experience with tamoxifen is that the first couple of weeks I felt changes but it got worse by week three, but still pretty mild at this stage. By 3 months I started feeling more side effects that seemed to level off. I felt that some of it, minor cramping and the inability to regulate body heat just became part of daily life and not too disruptive. I didn’t really have hot flashes, but if my body was overheated, like a hot day in the car or a hot bath, my body couldn’t cool off fast enough. I’d be uncomfortably hot for a while, but didn’t have that flash of heat. I also had brain fog, which I think I adjusted to and didn’t realize how foggy I was until I did a drug holiday and then lowered the dose. A drug holiday, and subsequent brain MRI, was recommended because I was having headaches 24/7 that had no other cause.
I started on 20 mg for 6 months. I self prescribed 10 mg because I couldn’t stand the headaches at 20 mg - and couldn’t get in to see the doctor fast enough. I did not notice a change in symptoms with 10 mg.
Then did a recommended drug holiday, I did 5 weeks. And started on 5 mg. So I went through that initial start up a couple of times and it was the same on both, 3 week and 3 month markers were when I felt the biggest changes.
I have self prescribed myself a lower than 5 mg dose (I’m not recommending this to anyone because there hasn’t been enough research to show that 2.5 mg is enough, although DeCensi’s research showed that it might be). I was having memory issues - and it’s hard to say if it’s just old age or tamoxifen - but it is concerning to me, and I thought if I lower the dose a little and regain my memory then that’s the answer. I’m sure my oncologist cannot ethically recommend the 2.5-3 mg dose I’m taking because, ethically, he can only recommend what he has data to show it works.
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3 Reactions@triciaot
I am having lots of irritability, brain fog and also some depression. I also get Charlie horse type pain in my toes, feet and calves. And I started having blurry vision with very dry eyes. I did not have blurry vision before starting Tamoxifen.
Went to the eye doc and she says use drops and Readers. The drops don’t seem to be helping much but the Readers help some. The vision issues are just really frustrating when I’m trying to work on my laptop.
And the emotional feelings are hard too. I will ask about lowering my dose and see if it helps at all.
Thank you!!
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2 ReactionsI’d ask whether they thought the Charley horse cramps were from a change in your calcium and potassium levels - and balance of the two.
I’d suggest that you might need a different reader for the laptop and regular reading. The laptop is usually farther from your face than when you read a paper or book. The farther distance would mean a different, maybe stronger reader.
Also you might see if you can brighten your laptop screen. Cataracts ARE a side effect of tamoxifen, and early signs are the need for more light to see and read. I also enlarge the text on my laptop and email - I can read the smaller text but it is easier to quickly scan through text that is a little larger.
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3 ReactionsI doubt that cataracts are forming in a few short weeks, and I agree with giving it a few more weeks then talking to your doctor. There are many ways to adjust dose or even try a different therapy.
I took tamoxifen for 5 years like very many women do. Some things like the emotional feelings and the irritability did get better when my body adjusted, as did the cramps. I did use magnesium frequently at the beginning to help with that.
My doctor recommended systane gel drops several times a day for the dry eyes which seemed to alleviate the dry eyes while working on the computer.
I eventually added sertraline (antidepressant) lowest dose to get through the 15 years endocrine therapy.
Adjusting your dose or even trying a different medicine is an acceptable way to keep your eye on the prize, which in its simplest form is not having a relapse, treatment for or dying from breast cancer.
It was not always easy and the hot flashes and dry eyes remain 20 years later, but I love to say “ I have had 20 years to complain about it😂”
Are you comfortable having these conversations with your doctor to find an acceptable path through this?
Can you think of all the reasons you are going through this mostly annoying treatment to begin with, like family, friends, or love?
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2 Reactions@auntieoakley
Thank you so much!! I appreciate it!
I will try the Systane drops and if my mood doesn’t improve I will ask about Setraline since I had to wean off of my Wellbutrin before starting the Tamoxifen.
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2 ReactionsHi
Thank you for the information I know the Doctor is only going to start me on 5 mg. If I have to go on it, so I guess I'll find out next week. Thank you again.
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3 ReactionsI think the treatment for DCIS is generally the same as stage 1 which I had, 3 mm, no nodes, clear margins. No chemo recommended and I opted out of radiation as lifetime survival for my age was almost the same as with radiation. DCIS is still a cancer but contained in milk duct. Mine was invasive as it left the duct. I have been on Arimidex for over a year and managing ok. Some hair loss but nothing huge, bone pain hard to quantify as have arthritis but taking turmeric for that and vaginal moisturizer as skin is very very dry down there. You will get through this !
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2 ReactionsSorry y’all, I didn’t mean to imply that tamoxifen had caused cataracts in my response. Only that if you’re a certain age, cataracts may already be forming, as I have. And tamoxifen may hurry that along - so an increasing need for brighter light might be noticed.
My posts are already so long, that I try to limit my words - maybe I cut out info that should be included to reduce misunderstanding.
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