DCIS do I really need an AI?

Posted by marylynr @marylynr, Jan 29 6:40pm

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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I have peripheral neuropathy from chemo. I had chemo, 6 weeks of radiation and a lumpectomy. I told my oncologist I didn't want to take taxmoxifen or any other AL. I'm 82 and life is short, why make myself miserable like when I was in menopause and emotionally a mess.
I saw my oncologist several weeks ago. He looked at my blood work and said he didn't expect my breast cancer to return.

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@raebaby

I have peripheral neuropathy from chemo. I had chemo, 6 weeks of radiation and a lumpectomy. I told my oncologist I didn't want to take taxmoxifen or any other AL. I'm 82 and life is short, why make myself miserable like when I was in menopause and emotionally a mess.
I saw my oncologist several weeks ago. He looked at my blood work and said he didn't expect my breast cancer to return.

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I totally agree that we all have different choices for different reasons. If I were you, I would likely make the same decision you did.
In my case I was in my 30s and I was hoping to have to live with my decisions for many years to come, so I hope my choices were the right choice for me. Time will tell.😁
I always hope when I am reading posts that people are finding the best treatment choices for them.
I am always curious what helped people make the best choices.
What were the driving forces behind your decisions?

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Yes, They have an Oncotype DCIS genetic test which will give you the percentage of reoccurrence with. Radiation & AI’s & without doing either. I had one done after DCIS that was contained in the duct. I have a 9% chance without doing anything more so I chose not to do radiation or meds. If you do radiation & have an invasive reoccurrence in the same breast then your only option is a mastectomy since they can only radiate the same breast 1 time. I was diagnosed at 62 & also have Osteoporosis so I also declined the AI’s since that can cause more bone issues. At my 6 month diagnostic & 1 year follow up mammograms so far, I’m good. I’m planning on being diligent in my screenings so if anything does show up I hope it can be caught early on.

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@rene1636

Yes, They have an Oncotype DCIS genetic test which will give you the percentage of reoccurrence with. Radiation & AI’s & without doing either. I had one done after DCIS that was contained in the duct. I have a 9% chance without doing anything more so I chose not to do radiation or meds. If you do radiation & have an invasive reoccurrence in the same breast then your only option is a mastectomy since they can only radiate the same breast 1 time. I was diagnosed at 62 & also have Osteoporosis so I also declined the AI’s since that can cause more bone issues. At my 6 month diagnostic & 1 year follow up mammograms so far, I’m good. I’m planning on being diligent in my screenings so if anything does show up I hope it can be caught early on.

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Hi
I asked my oncologist about this post. As far as if you have radiation Can you only have it once on a breast . His response was that is not necessarily true. It depends what the location is and how much radiation you have. And if a recurrence is in another area you definitely can have radiation. Just thought I would share that.

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@sue417

Hi
I asked my oncologist about this post. As far as if you have radiation Can you only have it once on a breast . His response was that is not necessarily true. It depends what the location is and how much radiation you have. And if a recurrence is in another area you definitely can have radiation. Just thought I would share that.

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My oncologist told me the same: not true, you can have radiation/lumpectomy again and said but most people chose to have masectomy rather than going through everything again.

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Take a look at Uptodate.com free article Ductal Carcinoma in situ: Treatment and Prognosis. It is an excellent read and covers everything.

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@sue417

Hi
I asked my oncologist about this post. As far as if you have radiation Can you only have it once on a breast . His response was that is not necessarily true. It depends what the location is and how much radiation you have. And if a recurrence is in another area you definitely can have radiation. Just thought I would share that.

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I agree, although this is relatively new. When I had radiation in 2004 they still said only once because radiation wasn’t as advanced as it is now. Radiation has come a long way, it is very targeted and with pinpoint precision.
If you have targeted radiation you might be able to get radiation again, just not in the same place twice.
Thanks for sharing.

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Yes, you can get radiation in the same breast but not on the same tissue. I had VMAT radiation, I’d explain but it’s too long. Good info available on the web. It is the type that lays down layers of radiation to precise areas. Part of your decision may be where the radiation would be targeted.
Mine was in the lower outer quadrant. Which left the top half of my breast untouched. Since the upper outer quadrant is the lost likely site of cancer, and near where most of the targeted lymph nodes are, that area on me is “radiation virgin” and can receive radiation if I have a recurrence or if it moves to the nodes.

Also in the decision, is whether you had an MRI where they looked carefully at the whole breast before making the radiation decision. There is always the thought that whole breast radiation would kill off small cancer spots that haven’t developed into visible masses yet. The type of cancer, the stage, the prognosis all give clues as to whether there might be other hot spots that would benefit from whole breast radiation.

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@windyshores

@marylynr as you can tell from posts here, you really need more information to make a decision. Especially ER, PR and HER2, and an Oncotype score if done.

I had invasive cancer so I cannot speak to DCIS. But I will say that in the 5 years I did an AI, my side effects were very tolerable and many many people finish the 5 years or even 7 or 10. Bone meds are given alongside. I had osteoporosis before cancer and still did an AI. I did not do a bone med because my doc was nervous about another health issue, but I did a bone med afterward and my bones are better now than before cancer. Another option is Tamoxifen.

Come back with more info if you like- hormonal scores, HER2 and Oncotype will help a lot.

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What bone Ned did you do?

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@beachbabe

What bone Ned did you do?

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Tymlos for two years brought be back to precancer levels, actually better than precancer. I am doing Evenity right now for an undetermined amount of time and then finish with Reclast to "lock in" gains.

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