Aromatase Inhibitors: Did you decide to go on them or not?

@callalloo very interesting! and @madeler22 as well. I had never heard that term and cannot even find it on Dr. Google 🙂

I was told that a DCIS is invasive if cancer cells are not fully contained within the milk duct. But contained within the immediate area. I could have that wrong as, admittedly, the few weeks when the cancer was discovered and excised are a blur that led me reading medical studies and falling down repeater rabbit holes on Google Scholar. 😏

I had a similar experience and descriptive diagnosis. Because there were cancer cells outside of the duct, the term invasive applied. And that made it a Stage 1A. Otherwise it would have been a Stage 0. I agree that hearing the word "invasive" got my attention. Not to mention what it likely did to my heart rate. I had visions of a very short lifetime remaining.

For what it's worth, the percentage of cancer cells outside of the duct was small and they were in the immediate area. I'd like to think that the tumor tissue was "barely invasive" but there is no such designation. I am glad that it was detected as it was so small that it was missed by two doctors', and my, physical exam.

Here's the irony. I'd had a lump in my armpit on the same side of the body as the cancer. A male friend nagged me to mention it to my PCP at my exam. (It seemed to come and go and I thought it was an ingrown hair as I'd had them before.) My doctor couldn't detect the lump but ordered a "diagnostic" mammo and ultrasound to be extra cautious. They couldn't find the lump either but found the DCIS invasive. The underarm lump never showed up again and the sentinel lymph node biopsy was clean.

@callallooo If you have DCIS, then your decision may be different from someone with an invasive cancer. I have read that DCIS is considered a pre-cancer.

@madeler22 interesting that you also had "invasive DCIS."

I am still not clear on the term "invasive DCIS" since I would have thought "invasive" would mean the cancer cells had spread beyond the ducts (or lobes). Any Google results say that DCIS is non-invasive so would love more clarification.

Most women I know did not have significant joint pains on AI's . Some do. I think it is worth it to try them and persist for awhile, since any side effects tend to change or even fade over time.

I haven’t written since April when I was one month into taking Anastrozole following 25 radiation treatments, preceded by a lumpectomy (5mm) and excision of 3 sentinel nodes for DCIS.
My radiation left me with a painful rash which led me to take a long weekend off before starting my drug.
A month into Anastrozole, I felt no different. Three months in, the side effects have started, mostly in my hands, which are so claw-like stiff in the morning, that I have to work them several minutes to ease the pain - they also get this way at night. Though I am experiencing some other mild joint pains, (stiff leg joints & lower back), the brunt of it is in my hands. OH, and did I mention the weight gain?! Ok, that’s a discussion for another time! 😳
My next followup is July 5th at which time I will discuss these issues as well as the possibility of taking an alternative drug - I have a few friends who switched to Letrozole w/o joint issues, so we’ll see. My surgeon asked to try to hang in there & discuss these options with my oncologist.
I wanted to briefly discuss the “invasive” word that I’ve seen discussed. My 5mm lump (found on routine mammogram- not felt/discovered by me or my GYN even a month before mammo); was labeled post-biopsy, “invasive ductal carcinoma in situ”. When I saw the word invasive, I almost fell over, but I was quickly schooled not to confuse “invasive” with “metatastic”. I was then told that in the breast cancer world, invasive means that cancer has invaded your otherwise healthy tissue. I was further told that “types” are determined post extensive biopsy - HER2 Neg, Estrogen/Progesterone Pos; and that “stages” are determined post surgery/Biopsy (for me, Stage1A -, except for Sentinel Nodes, which are examined initially during surgery (my 3 were Neg), then further examined post surgery - all 3 were clean, as were the outer margins of the tissue in my breast.
My point being, my cancer was confined to that 5mm area, even though initial biopsy reports after mammogram called it “invasive” DCIS. A scary word to the patient, but to those in the cancer field, not so much.
As always, this is my journey & I never try to speak to anyone else’s, other than to empathize and wish you all well with yours. ❤️

The only thing that matters is if a person's decision makes sense to that person, though. Mine does for me. I'll never know if it was 'right.' Even I get a recurrence of cancer, taking the AI would have still given me a 3% chance of recurrence so I wouldn't know if the AIs would have prevented it anyway. And I prefer to skip the joint pains, and limp, that anastrozole caused in two different attempts. Not to mention the risk of accelerated osteoporosis. But again I'd have 3% odds of recurrence even if I took the drugs. For me, it's worth an added 2% risk and avoiding AI side effects.

PS I was thinking that the OncotypeDX was for early-state cancers but, you're correct, a newly-caught tumor can be a higher stage. Apples and oranges
confusion on my part ;-).

@tygerrag2
As far as I know, one can start AIs at any time but usually, for obvious reasons, a few weeks after surgery. Your oncologist will advise you. But the thing is that some people start AIs and, maybe due to side effects or other health things going on, stop them for awhile. Then restart again.

Some people decide against AIs initially then change their mind and begin them later. There's not a deadline for the drugs, per se, but most oncologists who recommend them obviously prefer that a patient start them soon after surgery, or maybe after post-surgery radiation, and remain on them until further notice.

Does anyone know how long do we have to decide on whether or not to tak an AI?

Do I know how long following radiation do we have to decide to take an AI or not?

@callalloo DCIS is non-invasive/pre-invasive so did you also have invasive cancer? What do you mean by "I had DCIS invasive?"

I think it is reasonable to avoid meds with DCIS but that reluctance should not necessarily be relevant for those who actually have invasive cancer.

The Oncotype Dx is also used for those with 1-3 lymph nodes so not just stage 0 or 1.

Reduction from a risk of 8 to 4% is significant.

I took letrozole for 5 years with very few side effects, and none of my friends had side effects from AI's, other than bone loss of course, which can be addressed.

I just want to put a positive word in for these medications. I miss being on it because I felt protected. Forums tend to be negative and then everyone is too scared to take meds. Try them!