TRIPLE POSITIVE GROUP

Katiss!

It was great to hear from you again. Glad to hear that you're doing well!

kattis - good to see you again!

gamzu - is it possible to speak to the radiologist (maybe on the phone?) who will read your MRI in advance of the imaging? I would want to make sure they have the whole previous story. You never know what documentation they have and will consider when looking at the results, and there could be information gaps. One good thing is that because MRI shows slices it is more dynamic imaging than mammo or US.

Y'all I just found the most amazing Holy Grail of a website that I wanted to share with you. You're probably already aware of it but it's new to me: https://foodforbreastcancer.com/

It has a breakdown of recommended foods and foods to avoid, both during treatment and afterwards. It is chock full of the science behind how each food affects our bodies. I am so happy and I wish I had known about it during my chemo. Hopefully it will be of help to you all. Enjoy! I'm gonna go eat some carrots!

In the first good news I've ever had from an imaging study since this all started, my 6-month follow up MRI results just came in and are clear. We're continuing to follow a BIRADS 3 probable internal mammary lymph node but the report says it's unchanged from the previous study. No mention of any mess at the missing clip site.

Starting to get some joint pain from the exemestane and it's doing my head in a little bit; I've got this sore spot on my spine that I think is muscular and due to the exemestane because it just feels like stiffness after I get up (like after I sleep) and I can stretch it out by hyperextending and bending forward a few times and then it's gone in a minute. But how do you know what's side effects and what could be bone mets? This is on my list of questions for my MO because aches and pains is very much a known thing with exemestane and I'm sure I'm not the first patient to ask.

I also became an aunt over the weekend, as my brother and his wife had a baby girl. Multiple people, including my brother, have said she looks just like me, and I definitely see it! My brother and I look pretty similar so it's not too surprising. Given that having my own biological children may be a pipe dream, I am ALL ABOUT this baby and am thrilled to be an aunt and that my parents have a grandchild. We're going out to visit next month. The last time I visited them was when I got my cancer diagnosis, so we're trying to replace those memories!

Also want to say congratulations on becoming an Aunt gamzu! I’m on tamoxifen so can’t help you with the anastrole. I’ve been on tamoxifen for 7 weeks and it’s been good. I did have some hip pain/hot flashes but they already have disappeared! I’m hoping this continues on. I don’t even really know I’m taking anything so far.

Thanks, all! My niece is the first grandchild on both sides so the spoiling is going to be ridiculous. I've become That Person that whips out my phone to show off pictures to everyone and it's only been 5 days.

SpecialK, my line of thinking is similar and is what has kept me from meltdowns so far. Also the fact that I had bloodwork last week and my calcium levels and everything else was fine. I notice it when I'm lying or sitting in certain positions for too long and it fades once I stretch it out and start moving again. I expected pain and stiffness (also noticing in my knees, elbows, neck, etc.) with exemestane; I just want to have a conversation with my MO about what to expect, what she's seen with other women, and how to keep my sanity when facing these particular side effects!

The side that was irradiated is also very tight because I was dumb and didn't keep up with stretches. And I'm just tightly wound in general all the time now; I'm constantly catching myself all tensed up with my shoulders hunched and horrible posture!

Gamzu I’m chiming in here. I had a lot f joint pain on arimidex. My onc and pcp recommended Cymbalta, off label. It’s an anti-anxiety drug that was showing a lot of pain relief with people. I swear that is a miracle pill. It helped my pain immensely. Found out my SIL takes a pretty hefty dose for her back.

I’m staying in it for the rest of my life. I feel like it helps with arthritis too.

speaking of the rest of my life…I went to my ob/gyn for my two year check up ( first time I got to go 2 years). In the last couple of months I’ve been having some nagging pain on the right side. She does the exam…hits the spot…I have an enlarged right ovary. Pelvic ultrasound next Wednesday. Of course, I’ve been reading and the one consistent thing is ovarian cancer. Cysts are more rare at my age and the other stuff doesn’t fit.

I could use a Valium prescription about now. I can feel the same sort of panic disorder i developed last time creeping in.

I’m hoping that what we thought were gall bladder issues aren’t related to the ovarian issue.

Now a funny story. Last time I posted in January, I think, I was preparing for my gallbladder surgery. We go to the hospital. I meet with the anesthesiologist, the doc pops in, they’ve got me all prepped except for the iv.

Nurse walks in the room and says…ummm, you have covid. WHAT??!!! totally asymptomatic. So home I go. Spent five days holed up in my bedroom. I did develop very minor symptoms. Found a doc to give me the antibodies. Had that done.

So, official gallbladder surgery was late March. Pretty easy recovery. Getting used to diet changes.

Special k-you are absolutely right about what happens with high fat meals.

I’ll catch up with everything on here over the next few days. It’s where I come when I’m most paranoid.

Elainetherese-I am a massive warrior when suspicious things happen. Living past bc is not my strong suit.

In this case, when I look at all the possibilities, unfortunately for my age the most likely scenario is the bad one. Hoping it’s not but…

Ugh, fluffqueen, I really hope it's just a cyst. How unfair. Not that anyone ever asked us.

I'm getting over Covid at the moment. Today was day 11. Mostly back to normal except for some sinus drainage and headaches. It did have the effect of making me completely forget about all my exemestane aches and pains!

flufff - I had a total hyst/ooph about 20 years ago due to continuous bleeding and TVUS that showed many large uterine fibroid tumors. I initially went to the gyn because I had enough of the symptoms on the list of ovarian cancer to be concerned. I had a long history of ovarian cysts, including one lemon-sized one that ruptured. That hurts worse than labor. Post-operative pathology revealed a surprise 3cm mass (pre-malignant) in the right ovary, which was either missed by US - consistent with my history of imaging - or it grew to that size in the time since the US. The ooph was elective, so I was very glad I did it despite the surgical menopause. Hoping this is something harmless for you and fixed by surgery.

DH is recovering from Covid, caught at work from exposure to someone who had a sick family but came to work unmasked all week. SMH! What are people thinking? I have been hiding on the opposite side of the house - he had a very symptomatic case and it was actually a scary experience. Super high fever for days. My WBC is very low so even though I am vaxxed and boosted, so was he, we were very careful and I escaped without getting it - It has now been over two weeks since he tested positive. Not a fun experience but it was an excellent reminder of why it has paid for me to be a hermit and mask everywhere I go.

Hi jh40 - If you decide to have another MRI, ask for a sedative to help you through it.

My situation was different, but similar. My BC was found on a routine breast MRI. My turmors were next to each other total 7.5cm. The tumors didn't show in the mammogram 6 months prior. My BRCA was negative, but there's a family history of BC. My breast surgeon scheduled another MRI, but canceled it after I decided on a mastectomy. The MRI would have been used to place clips. I did chemo first based on tumor size, then single mastectomy, then targete treatment. I did prophylactic mastectomy a year later.

Best of luck with your decision and treatment.

Hi!

I did chemo first. It cleared out all of the active cancer in my breast and compromised lymph node. I had what is called a pathological complete response (PCR) to chemo, which is seen as a good outcome. By doing chemo first, I was able to see that my chemo had worked for my particular kind of cancer. Not everyone has a PCR. If you have residual cancer after chemo, your oncologist may recommend further treatment such as Kadcyla.

Also, neoadjuvant chemo gave me greater surgical choices. Because the cancer was gone, I just went with a lumpectomy instead of mastectomy.

If you want a mastectomy, it might not be important to get the MRI re-done. However, an MRI could also pick up on any compromised lymph nodes, which you might want to know about before surgery. I had a PET scan and an MRI done before chemo and after chemo. They indicated that the cancer was gone, and that was confirmed by the post-surgery pathology report.

Good luck!

elainetherese - thank you for that insight. I could see the chemo before surgery being great for clearing them out if there’s lymphs involved, and also for surgery options. I want to avoid recurrence and radiation if I can, which is why I’m opting for mastectomy. My surgeon says I’d have a 17-20% recurrence rate with lumpectomy/radiation. Less than 5% with mastectomy, and wouldn’t need radiation.

I’ve still been concerned about my lymphs despite a lot of positive opinions.

The head of radiology did my initial imaging at the local hospital. She said the lymphs looked uninvolved. The radiologist who did my biopsy said the same thing, and my surgeon did too when she reviewed the images. No way to know for sure without testing though, right?

My surgeon says she will take 3 nodes and send them off to be tested in the lab because apparently there’s a 33% false positive reading in the surgical environment. That was news to me when she told me, and I’ve never heard or read about that anywhere else. Does this seem right?

She says that with surgery first, and with no lymph involvement, I could avoid the heavier chemo and just get the 12 rounds of Taxol, which she says is gentler, followed by Herceptin and hormone treatment. I think she’s trying to spare me the extra toxicity with surgery first

elainetherese - I see all of that logic. Makes a lot of sense. Also the bigger tumor reveal...my terror! But I have been aware of this happening sometimes.

I’ll be speaking with my oncologist on the 8th and I’m sure he’ll have a lot to tell me. I’m going to mention everything to him, (the things you said as well) and see what he makes of it all

To be fair to my surgeon, she did recommend that I speak with my oncologist before surgery as well.

gamzu710 - wow, that’s a crazy experience. That must have been really tough to find out it was cancer in that way.

Thanks for your insight. It’s really helpful to hear other stories.

I have so many questions and feel like I’ve been waiting so longask them. I’m also feeling pretty disappointed that my MRI turned out to be such a fail.