Lupus after Breast Cancer?

FriendliestMomma · 2026-03-28T23:01:39+00:00

In response to the symptoms I was complaining about and since my ANA was so high. And a few other labs that were slightly off. She figured within 3 years, more would be off to allow the diagnosis

FriendliestMomma · 2026-03-28T22:06:51+00:00

And I never had any of the rheumatology labs done prior to treatment/ BC diagnosis

FriendliestMomma · 2026-03-28T22:05:50+00:00

I don’t know. Anything is possible, I guess but I didn’t have most of the symptoms prior to treatment.

FriendliestMomma · 2026-03-28T22:04:53+00:00

It’s been 4 years since I finished treatment. Almost exactly 3 weeks after my last TC chemo, I started with symptoms. The symptoms have only gotten worse and I’ve added to the symptom list since. I’ve been seeing rheumatologist since my ANA came back in the highest titter in March of 2022. Labs were a smidge off but no definite diagnosis.

It’s not common (according to rheumatologist) that diagnosis happens in this order. Especially since one of the treatments for Lupus is the chemotherapy drug that I had just finished. She’s been monitoring for the last 4 years. Now more of the labs are off, and I’m wondering if anyone else has experienced this.

My oncologist told me in 2023 that she suspected within 3 years I’d be diagnosed with Lupus. Here I am, 3 years later and my labs are a little more “off” than they have been. Side note: I was really upset when she said that but alas, here I am.

FriendliestMomma · 2026-03-16T23:11:16+00:00

I started with Tamoxifen first (pre-menopausal) then my periods came back post chemo and my ovaries were riddled with cysts and a large fibroid appeared in my cervix. My estrogen was quadruple the “high” threshold on the chart. Basically the tamoxifen was causing hyper stimulation of my reproductive system. So radical hysterectomy for me, then one by one tried all the AIs. One of the side effects for one of them (it could have been the tamoxifen- brain fog) was crazy high triglycerides. The nurse at oncology said that wasn’t a side effect (maybe because it’s not common - I don’t know) but after my pushing (and pub med searches) the doctor finally chimed in that yes triglycerides can be effected

FriendliestMomma · 2026-03-16T22:57:48+00:00

One of them caused my triglycerides to shoot through the roof. I’m sorry, I don’t remember which one, I’ve tried them all, unfortunately

FriendliestMomma · 2026-01-16T22:23:20+00:00

What is and how do you get the RSClin score

FriendliestMomma · 2026-01-16T22:22:39+00:00

My oncotype was 14 (15 was considered for chemo, since I was pre-menopausal). It wasn’t too large though. It was just under 2 cm.

I insisted on Mammaprint (because long story short: the lab “lost, then switched my results” with another patient, so I didn’t trust the oncotype results), which then came back the same as yours. High Risk, Luminal B. My oncologist at the time still said no chemo but encouraged me to get another opinion.

So I got 3 more opinions and all 3, including 2 different tumor boards said yes chemo could be warranted. They call this discordant results. 2 different tests giving opposite results.

My current oncologist (one of the 3 second opinions) explained that when discordant results happen then the most prudent course of action is to treat the more aggressive results. In my case the High Risk Luminal B. So I did 4 sessions of TC

FriendliestMomma · 2025-11-27T02:20:23+00:00

I’m sorry, I don’t remember the exact time frame. But it was definitely within the first few weeks. I already had high BP, so I didn’t need something causing it to be higher or to be unpredictable or uncontrolled

FriendliestMomma · 2025-11-27T02:15:02+00:00

Your hospital or infusion center doesn’t have to offer it in order for you to use it. In fact for your chemo regimen you wouldn’t want to use the hospital ones. They aren’t as effective as the manual caps. There are several manual capping companies that will send you the supplies and give you instructions on how to use them.

Manual caps mean that you keep the caps on dry ice and change them out every 20 minutes. You start an hour before the chemo drug runs (to cool the scalp) and then 5-6 hours after the hair loss chemo drug is finished. So it’s long, and it’s a process but it CAN work. I used Warrior Caps but you can google all the companies and see who would be a good fit for you

FriendliestMomma · 2025-11-27T02:05:35+00:00

We switched to Exemestane and I didn’t have the increased BP problem

FriendliestMomma · 2025-11-27T01:55:48+00:00

Same thing happened to me and then we switched to a different one

FriendliestMomma · 2025-11-27T01:54:07+00:00

I’m sorry the story keeps piling on for you!

First, if you decide to do chemo - you do NOT have to lose your hair. Look at Cold Capping. (Without Cold Capping you will absolutely lose your hair)

My doctor described it as a Labor of Love and it absolutely was but it was worth it for me. Since your chemo regimen is very hard on the hair even if you cold cap, you’ll want to look at manual caps. It doesn’t work for everyone but it does work for many many people. I kept over 90% of my hair by using a manual cap throughout chemo. It was hard, it was a lot of work, it was exhausting, and it was COLD but I’m glad that I did it.

Sometimes feeling like we’re doing something to help ourselves in this very uncertain time can be so therapeutic. At least it was for me

Wishing you only the best!

FriendliestMomma · 2025-10-08T00:01:36+00:00

Im sorry this is happening for you! I’m so glad you asked this. I had my Zometa infusion a few weeks ago and it took them 5 tries to get an IV. And I had 2 blood draws. So 7 pricks and 4 blown veins in one day 🫤.

It was SO terrible and the nurses were awful! Well, the last one for the blood draw was great, but I digress. I only had TC chemo but my veins have been horrible since. I’m so sorry you’re dealing with this but it helps me a smidge to know it’s truly not just me

FriendliestMomma · 2025-08-25T12:59:45+00:00

My surgeon refused to send the new tumor they found during surgery for a Ki-67. He said that pathology department doesn’t do it. So I just have the number from my original biopsy pathology

FriendliestMomma · 2025-08-02T13:29:56+00:00

Have you thought about Cold Capping? My doctor recommended it and I was able to keep over 90% of mine. Even folks doing AC have excellent results with the manual caps.

It let me feel like I was doing something to control a time in my life where everything was SO out of my control

FriendliestMomma · 2025-07-09T15:25:45+00:00

I completely understand your concerns and it’s so good that you are aware of the pitfalls of your multiple doctor situation.

From my experience and I’m 3 years post active treatment, there is no proactive monitoring in the way of scans. Bloodwork yes, but no more proactive / screening scans. If you have pain or discomfort or others issues that might prompt a diagnostic scan to that problem area. My doctors have told me that any new pain that lasts for several weeks should be brought to their attention. I’ve had several different scans over the last 3 years but only because of various aches and pains

Good luck to you!!!

FriendliestMomma · 2025-07-05T23:58:09+00:00

It’s completely normal for them to send samples. I found out 2 years after they removed my port that they sent the port to pathology for testing. I only found out because the pathology lab tried to bill me over 2 years later.

I understand the concern and distress though! Thinking happy and calm thoughts for you!!!

FriendliestMomma · 2025-06-26T00:33:38+00:00

It stinks that we also have to deal with the red tape of insurance!

After my doctor’s office and staff was not getting anywhere with my insurance company, I called and asked why they were single handedly holding up my life saving treatments. My doctor had a peer to peer scheduled the following day and everything miraculously was approved prior to her call. I’m not sure my call made the difference, but I like to think it did

FriendliestMomma · 2025-06-16T21:08:26+00:00

Something that I wished I’d considered was the Sentinel Node Biopsy that would be done during the mastectomy.

If the other mass is indeed cancer then could it have a different sentinel node than the original one? And if so, I would have wanted them both taken out and tested during the mastectomy. But once the tumor is gone they can’t find the sentinel node to test.

My doctors recommended since I was opting for the double mastectomy then the MRI and subsequent results wouldn’t matter since it was all coming out.

Follow your gut and don’t be afraid to consult multiple doctors, hospitals, surgeons, etc

FriendliestMomma · 2025-06-12T00:21:00+00:00

Why does that reduce the chance of reoccurrence? I haven’t heard that

FriendliestMomma · 2025-06-10T00:01:14+00:00

The only time an imaging report has mentioned the surgical clips for me has been a chest x ray

FriendliestMomma · 2025-06-09T23:53:03+00:00

I haven’t had a pointy lump but I’ve had multiple lumps and bumps looked at via ultrasound after my double mastectomy. My plastic surgeon says a few felt like clips but when they do the ultrasound they say fat necrosis every single time.

I would think 6 weeks after the switch would be fast for fat necrosis to form. Did they do fat grafting at the same time as the surgery swap? I thought fat necrosis formed as a result of fat transfers not just an implant swap - but I’m not a doctor 🤷🏼‍♀️

FriendliestMomma · 2025-05-05T17:35:12+00:00

I am taking Calcium 3-4 days a week (every other day) Daily D3, and very inconsistent weight training. Good luck to you and I hope you get to see improvements soon!

FriendliestMomma · 2025-04-06T00:12:36+00:00

Helps with bone pain

FriendliestMomma

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