Does anyone have experience with encapsulated papillary carcinoma?

I had the exact same thing and talked at length with my oncologist about the research or lack thereof. I did not do radiation but am taking same dose of Tamoxifen. The way she put it “ This cancer is gone and won’t come back but there is a reason your body made cancer so we must be on high alert”

Thank you...so nice to get your input. I am notoo excited about Tamoxifan but will try it and see. My oncologist says he has a low threshold for staying on it if I have issues and gave timeline of about 2-3 years to be on it only. My goal is 3 years.

I got 3 opinions until I finally felt ok with partial breast low dose radiation 5 x.

Trying to eat better ...more frimuits and veggies.

Fruits :)

Also dont understand why your doctor says it won't come back but then recomme.ds Tamixifen? Hmmm I will be having diagnostic mammo every year for 5 years too since it was missed on 2 3d mammograms at z dofferent places...hind site it was there at least 2 years traced back to a CT scan on my lung ...I had long haul covid ans wonder if ot came from that virus. .

7mm...never changed in size in that 2 years...I felt it this summer.

I’m only on week 4 of tamoxifen every other day. I have a previous history of migraines…. I used to get an aura before I got one. Haven’t had one in over 20 years. I will say that each day I take it I get the aura but no headache so far. Also days I am extremely fatigued but nothing else. Can’t even be sure these are related to the drug. In the end I’m glad I did it….

Just to clarify...you are glad you started Tamixifen? I am still struggling emotionally over Tamixifen. Today I rook my third pill so about 1 week now ans so very tired. I have ro go back to work next week and concerned about this fatigue feeling. Not sure if it is from radiation since it is week 3 after radiation or the med or emotions or what.

The doctor said that even though the cancer was gone because it was estrogen positive there was a chance that a new cancer could occur with the same properties. Yes I’m glad I started the Tamoxifen. I can always stop if it gets worse but I can live with current situation

Yes it is good idea to focus on why you got the cancer in the first place. Especially if you do not have the gene. So what did go wrong with the immune system or how it responded. So I went to an immunologist and had generic testing. Found out I have CVID ( common variant immune disorder). Long for I do not make enough plasma that makes immunoglobulins that mark cancer cells for your t-cells to fight cancer,viruses and other diseases. So I get plasma sent to my house and do sub-q in fatty tissue and it up loads to my body weekly. Wow I feel so much better. It is a genetic disorder so no amount of exercise or eating right was going to cure or help my body for the CVID. So I suggest to get your immunoglobulins tested that tells how well your immune system is. Prayers to all🙏

I now have the ability to actually fight off cancer. As of before I did not because I had rock bottom immunoglobulins. 🙏

Thank you for your input Sandra L., I will talk to my doctor about checking my immunoglobulins...

I was diagnosed in 2015 with a Micropapillary cancer stage 1. Less than 4% of all cancers had that makeup. At that time, they said it had a high rate a spread and recurrence. Drs wanted to throw everything at it even though the onco score didn't warrant it. That was 9 years ago. Mine came back 7.5 years later. Now it has been studied and it is treated the same as any other type of cancer. I will admit it was found by a mammogram. Never had a lump.

That was a long time before it came back...did you have lumpectomy or mastectomy?

They treated mine like DCIS because so rare there are not enough studies done for treatment therefore since it was stage 0 noninvasive, they treat like DCIS now.

Since I cannot tolerate medication I may opt for bilatéral mastectomy.

Had a lumpectomy and radiation. They wanted me to have chemo, but the onco score didn't justify it. This was the same chemo destroyed my dad physically back in the 90s. I was afraid to consider it

Glenda...did you ever take Tamoxifen or an AI drug to prevent récurrence? They recommended it for me for 2 to 3 years but I had too many side effects on Tamoxifen...I was only on low dose 10mg every other day for 2 weeks now on hold and I really do not want to try any others due to side effects.

Mary G. I was on aromatase inhibitors but the side effects were mentally unbearable for me. I ended up having to stop. No alternatives were offered. That was back in 2015. My Dr accused me of exaggerating. And when I told him I couldn't take them anymore with some sort additional meds to help with the side effects, I was discharged from the cancer center. Now I am stage 4. I have found exercise helps with the pain and I take an antidepressant for everything else.

Oh I am sorry...and do not think you are exagérating at all...vert mind alternative. I have to support myself and continue working and could not see myself being able to do this on only 2 weeks of low dose every other day. I was not myself, zoned sort of and just dod not feel right at all.

Sandra L Thank you,so much for sharing. I to do not carry the breast cancer gene according to 2 different genenic tests so I have been wondering how I got breast cancer. I, too, have CVID as well as Hereditary hypogammaglobulinemia which is another immune disorder this is, my second type of cancer.

Finding others who share the same rare diagnosis can be challenging, especially with something as uncommon as encapsulated papillary carcinoma. Many patients with rare conditions find themselves questioning treatment decisions when there's limited research specific to their diagnosis. Connecting with others who have navigated similar treatment choices could provide valuable insights and support during this time.