If you are not Stage IV but have questions, you may post here

Hello everyone,

I would like to ask about inflammatory breast cancer recurrence. I had completed radiation on my left mastectomy January 31, 2017. I still have tissue expander in not sure yet if I will do reconstruction. Since then I have taken antibiotic in May 2017 for mild cellulitis. Then in December 2018, I got some rash again on the left on TE. It started with some small red spots and I've sent pics to Dr. His nurse practitioner said just keep the area clean and monitor it. So in January 22, 2019 I went in to see the PS and at that time the rash kind of smudge out. There's absolutely no pain and no itching where the rash is. The PS did biopsy for IBC, varicella, and some other bacteria. I'm waiting for results. I'm just scared if it will be IBC. Does anyone have experience with similar situation and IBC? Thank you all and god bless.

I have a question... was anyone's recurrence initially discovered via increased tumor markers (CA 27-29 or CEA)? My CA-27-29 jumped from 31 to 67 and my CEA jumped from 1.1 to 11.8. I am having scans later this week.

Lori, yes, my recurrence was initially found by rising tumor markers in my CA 27-29! I had no symptoms. After almost 6 1/2 years of TMs in the normal range (tested every 3 months, I believe) after original diagnosis and subsequent treatment, the TM # creeped up 25-30 points out of the normal range. After seeing the rising TMs, we did all kinds of scans and couldn’t find where the cancer had returned. Finally did a bone marrow biopsy, and it was found there. I started on Faslodex shots and less than 3 months later, my duodenum was 100% blocked. It had come back in my stomach.

I have ILC (invasive lobular cancer), which is not easily found on scans, and originally diagnosed at Stage IIIC, so it was in my lymph nodes at initial diagnosis. To this day, my TMs continue to be an accurate indicator of progression. (Of course, this is not true for everyone but has always been for me in the 11 1/2 years since original diagnosis.) I’m thankful my TMs have been an accurate indicator of progression, as ILC can be truly difficult to monitor!

I just wanted you to know my experience. I wish you the best and hope your unusually high TMs are due to something other than a recurrence, which is also entirely possible.

Hugs, Southern

Thanks everyone for responding. My tumor markers have been consistent for over 6 years. I have them checked every 6 mos. My CA 27-29 was 41 when I was diagnosed stage 2b with lymphatic invasion. It has always hovered between 31 and 35. Once it went to 39 when they changed labs. My CEA has never gone past 4. When I was in for my 6 mo appointment, I was asking him what early lung mets felt like. I have had a slight pain in my lungs and a funky cough, mostly at night. He didn't think it sounded like anything to worry about. Then two days later he calls which he has never done in all our years together, The CEA worries me more than the CA 27-29.

Brain MRI clear... now we wait to have pet scan on Friday.

Hi Irishlove: There is a thread in this forum for those with RAD50 variants. I've pasted the link below. The second link will give you some info about RAD50, a DNA repair gene. Hope this is helpful and best of luck!

https://community.breastcancer.org/forum/112/topic...

https://www.ambrygen.com/sites/default/files/web/u...

Hello,

I have a question that I'm hoping someone might help answer. My CT results just came back in to determine my final staging and they said it looked fine but there were tiny benign and nonspecific lumps found in my liver. They said this is very common but that I'll need a follow up scan in 6 to 12 months.

Should I be worried? If it's so common why would they want to expose me to another scan?

Thank you for any feedback

I am wondering how todistinguish between joint pain caused by arthritis and that resulting from bone mets? I am experiencing pain in my left knee and right hip which is helped by Aleve. My PCD does not seem concerned.

hi i have mbc not sure what stage but was told i will have this for the rest of my life it was in my t 10 and rib, i also have it in my plevic. i have been on verzenio 150 mg 2x a day and shots once a month it seems to be working as per the last pet scan, plus i take anti-nausea pills since sept 2018.

i take baking soda 1/2 teaspoon 2x a day for my stomach and my kidneys, seems to be working for me.

my question is 1. does your body ever get use to the side effects. 2. does anyone have any weird side effects. i have an excessive amount of saliva cause problems eating sleeping and breathing, sometimes it seems like i am drowning. 3. i also have an excessive amount of flem in my throat causing me to cough up big white heavy flem, musinex helps, i take it 2x a day.

after that i have some of the usual side effects they list.

i am hoping other people will list some of their weird side effects so i do not feel so alone.

THANK YOU

GODS BLESSING

Hi Softsailor -

Here is a link to the main Verzenio thread 🙂 in case you are interested....

https://community.breastcancer.org/forum/8/topics/861227

my question for all of you! How many were IDC after core biopsy then at mastectomy became stage 4? I am ER+ PR+ HER2 negative my surgery is April 1, 2019

I have had elevated liver enzymes consistently for a year or more. I've had an MRI over a year ago on my abdomen and then an US in November....neither showed lesions. Just fatty liver. My PCP is sending me to a gastro and I'm beginning to worry as the appt is tomorrow. I guess I'm asking if it is possible to have cancer without lesions showing on these scans. Im completely exhausted most of the time. This has me concerned. Any thoughts?

Nanette,

have you had any scans? I'm assuming you haven't since they only discovered the nodes at the time of surgery. It doesn't necessarily mean you are metastatic, no. Your stage will likely no longer be staged as 1A, but a little higher. However, there are so many factors to staging. Only a scan can confirm whether or not you are metastatic. I believe when it's only in the axilla nodes, they will call it "locally advanced" vs "distantly advanced" when it's in organs/bones

I assume the next step should be a pet scan to see if it's anywhere else. But don't panic yet!

Princess, I’m sorry about your recurrence, but glad it’s so limited. What your onc has told you is outdated thinking on chest node involvement. Here are the newest guidelines, which puts you @ Stage IIIC. I would consider finding an oncologist who is more up on current research, thinking and treatment protocols.Hope this helps to ease your confusion! https://www.cancer.net/cancer-types/breast-cancer/stages

I feel incredibly stupid for asking, but can someone get metastasis from a < 2 cm, node neg, grade 2, Estrogen/progesterone pos, Her2 neg, IDC or ILC?

I had a 1cm, 0/24, E/P + Her2 - IDC in 2003 (Lumpectomy, re-excision, chemo, rads)

1.3 cm E/P + Her2 - ILC in 2018. (Mastectomy w/reconstruction only- no nodes removed because whole fat pad removed in 2003)

I'm under the impression that if I had a recurrence it would be at the mastectomy site or other breast before it would metastasis anywhere else in my body. I refused AI's for reasons I won't go into other than I made that decision due to my other health issues.

I had surgery in Jan, saw my breast surgeon for one follow up and won't see him again until the middle of the summer. I'm only seeing a plastic surgeon now. I only discuss surgery issues with him. I saw a medical oncologist once. I had questions after my appointment and sent an email with three questions . By the time she reached out to me about my questions it was over three weeks later and ironically (or not) I onlygot a message on my answering machine that she called to answer the questions a few hours after I cancelled my next appointment with her. I left a message with her nurse telling her why I canceled the appointment and why I refused the IA and said she can call me but I doubted she would change my mind. I never heard back and it's been over a month.