ER-, PR-, Her2+ Roll call
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Hello everyone!
I saw this forum and felt I should try postin here as well to see if anyone had the same problem like I do and I’m feeling very lost
I was diagnosed 11/21/17 right before thanksgiving. I have IDC grade 3, tumor size 3.2cm. Two lymph nodes removed both were negative. Port placed in. And now just waiting and more waiting. Ki67 45% (I still don’t know what this really is)
My 1st test showed I was HER2 negative. They recommended AC+T for treatment.
2nd test the fish anlysys said it was amplified. So my new treatment was TCHP. Then when I spoke to her she I tested HER2 positive at 2.46 my onc said anything below 2.0 is negative, and since I tested slightly positive she wants now a second opinion from another specialist. Well that specialist (also an oncologist) reviewed my case the other day and said she wants the HER2 retested. She wants it done in California by some best doctor in the country. I have no idea who this is and what this means for me other than moreeee waiting
My oncologist said that due to my age (I’m 34) and being so young she wants to get the best treatment and just the right one for me. But it's been 3 weeks since diagnosed and this thing is just growing inside me. They did tell me the type I have was very aggressive and now they are not treating it until these other tests are finished...
Did anyone have this problem? I feel so hopeless like they don't know what to do with me and I feel like this stupid thing will just spread!
So sorry for the loooong post.
Thank you all so much!
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Daniz - so sorry to hear about the delay. My MO re -tested my HER2 also, but even with marginal positive he wanted to start treatment right away. Probably influenced by the fact that I'm ER/PR negative, so no treatment avenues there. I had TCHP. Hope you'll hear soon.
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Hello MinusTwo. Thank you for responding. I’m also EE/PR negative. How long did you have to wait to start treatment? Did you do well on TCHP? I hear the side effects are bad. Thanks so much.
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Daniz - My recurrence was confirmed in February and the MO wanted me to start right away. I asked about my planned trip to NYC and a cruise in May. He said if I really had to go to NY, he would OK that delay, but definitely not Alaska - not that far forward and not that far away. Started neo-adjuvant chemo in March. It was just a busy month getting all the blood work & MRIs & CTs done.
I did OK with TCHP. Everyone has different side effects. My worst one was diarrhea. I lost 60 lbs. You should definitely join a current chemo group. It helps to go through it with others. Check the chemo heading for groups or check active threads. I also read the thread before - like Starting Chemo November or Winter 2017 chemo or such. There's also a TCHP thread but I'm not sure it's active. I'll find the "tips for chemo" and post it for you.
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Here you go. There also used to be a thread for young women with BC
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oh wow thank you sooo much for sending that. What great tips!!!! I’m definitly gonna need to stock up on everything. So not prepared, I feel like I’m frozen and can’t move to do anything.
I am sorry to hear about your reoccurrence. I hope you are doing well! Do you mind me asking where the reoccurrence was?
Wow 60 pounds. That’s a lot!!! I hear people have either major diarrhea and loose weight and others gain weight due to steroids. So crazy.
Thank you so much again!!!
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Initial diagnosis was for DCIS. I had BMX (bilateral mastectomy) and reconstruction in 2011. When I went back for my 2 years check up, I had a lump by my collar bone. It was diagnosed as IDC, ER/PR negative, HER2+. Yes thanks, I'm now 4-1/2 years past diagnosis of recurrence and still NED.
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Hang in there Daniz! Waiting is the worst, especially when you are anxious to start treatment. I was diagnosed on 11/16and startIng Chemo tomorrow. Although I haven't experienced any delays, I suspect it should only take a few days for a new HER2 result. My path report only took a few days. So, hopefully you're almost there
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Hi MinusTeo! I’m so sorry your had to go through all that. But wow what great results though, 4 1/2 years that’s pretty awesome. I wish you nothing but the best!!!
Mjb,
Thanks for the response. I’m hoping for some answers next week and then the specialist can finalize a treatment plan. Good luck to you!
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Hello. New to group ER/PR- Her2+. Bilateral mastectomy on 12/21/17. I don't know plan yet other than candidate for chemo. Will meet with team on Jan 9 and know more then. 2013 I was diagnosed DCIS on left breast. Had partial mastectomy then pathology found small tumor so back for lymph nodes. At the time Dr felt had clear margins. Radiation and Tamoxifen followed but stopped Tamoxifen after 2 1/2 years due to side effects. Fast forward to Nov 2017 and routine mammo shows tumor. Now dr feels was probably there all along and was missed. At first it was so unfair as husband went through oral cancer 2015 and I'm still a caregiver for him. Today, 5 days out from surgery, I am not missing my breasts and am grateful they are gone. I am worried about chemo and it's affects and how I'll care for me and hubby. Last daughter gets mar in February and I don't want to be Center of attention at her wedding. So much to think about. 61 years old. Dr says after 10 years from my first surgery I should be less than 5% chance of recurrence. But here I am seeking support from sisters. Thanks for listening. Look forward to readingothers experience in this battle.
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Hi Everyone,
Just diagnosed with ER negative, PR negative and HER2+++
Scheduled for MRI and consult with breast surgeon next Tuesday
Feeling very scared
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Hey there CENOK2017. So sorry to hear your news. I received the same diagnosis mid-November. I met first with a breast surgeon, too. Chemo is my first course of treatment and getting ready for #2 on Friday. Lots of great info and support here. I’m here to help however I can. The early days are so hardcore with waiting. In a weird way, I looked forward to every appointment and received more confirmation and clarity at each one opposed to surprises, so that helped. Hugs to you
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Greetings to those who are new to this group! I'm so sorry for the reason you joined us, but know that you are not alone!
I received all of my test results in Dec 2015 & Jan 2016... and I do understand and sympathize with how that affects the holidays!
My own chemo started in Feb last year, before surgery in Aug. I'm one of only a handful here who received AC-THP instead of TCH or TCHP; in other words, they gave me Doxorubicin & Cytoxan, followed by Taxol, Perjeta & Herceptin (the latter of which continued for a year)... instead of the usual Tamoxifen-plus. But that just means there are many other survivors on this thread who can empathize with what you're going through right now, and might even hopefully be able to help you understand what to expect... be there when you need to vent... and provide some "virtual hugs" throughout the whole process.
❤️❤️❤️
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Hi backmjb1018,
Thank you for response. I send you healing vibes! I live near Oklahoma City. May I ask where you live? I am wondering how the BS decides to do surgery first or chemo.
Please keep me updated on your progress!
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CENOK2017 I live in California. The way I understood it is because of the er/pr - and HER2+++. My ki-67 was about 40%, too, which also demonstrates the growth rate. Since the HER2 positive cancer is aggressive and fast growing anyway , it tends to respond well to chemo. Best to zap it fast! In my case the tumor is very palpable, so mentally it’s awesome to feel it shrinking. When it does (I think it already has!) we know the chemo is working. Opposed to taking it out and then doing chemo. It would be harder to know if it’s working. I guess my biggest surprise was hearing from the breast surgeon that I’d be getting a port right away to start chemo. I had assumed I’d get surgery first...She pretty much laid out my whole treatment plan! I thought that’d be fine by the medical oncologist, but I guess since they see this every day and all work as a team, they are in the same page. Best of luck to you Tuesday! Please let us know what you learn.
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Chemo is often recommended first for HER2 for the reasons mjb mentioned. I also had AC + T but did have Taxotere instead of Taxol. Doing well now except for some mild SE from Letrozole. (only 20% estrogen positive) Will be three years in Feb since diagnosis.
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mjb,
I just moved from the East Bay of San Francisco to Oklahoma a little over a year ago. I wish i was still there as i know there is good health care there and i am so unfamiliar wirh OK. I have herad food things about the Stephenson Cancer Center that I am going to go to.
I really have a feeling BS is going to do surgery first from what nurse navigator said. I will mention why not chemo first. Could it be Imhabe DCIS too?
I don't know what ki-67 is. Should it be on my pathology report?
How did you cope with the 'what ifs?'
Also, I am going to look for a blog on questions to ask BS. I feel paralyzed!
So happy your tumor is shrinking,
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If you have IDC and DCIS, the IDC will be what decides treatment. Doctors base treatment decisions on the most serious component on the diagnosis. Have you been seen by an oncologist? The oncologist will be the one to administer chemo. You may want to see one before you agree to surgery, except for the port placement of course. I saw the surgeon first but then she referred me to the oncologist all on Feb. 9. Got port on Feb. 13, and started chemo on Feb.19.
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Ki-67 is a protein that increases with cell growth. If you were tested for it, it should be on your report. Yes, I imagine DCIS is different. Since I have IDC, it has the potential to go willy nilly where ever it wants. So, I’m happy with chemo first to hopefully stop it in it’s tracks. What if’s are hard. All I can say is TRY not to do it. Focus on the facts and take one day at a time. Try to do something fun between now and Tuesday
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My report says 'at least DCIS' with suspicious foci .......on and on. You might have seen my post where after 'At least DCIS' news from radiologist, tissue was sent out to see if invasive. When that path report came back radiologist would not talk to me because he was not an oncologist radiologist...so I am assuming I have IDC too because of the HER2+++
Have appt with breast surgeon Tuesday. Hoping to find out more answers then. I am definitely going to ask why not chemo first if he suggests surgery.
I wish you the very BEST results
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CENOK - When you get a chance, go to 'my profile' and post the details. Once you enter those, we can make better sense of your progress. Previous posters are correct - if you are HER2+, you are likely to have chemo first to shrink the tumor (s) before surgery.
A port is a wonderful thing for us HER2+ people. Since we will likely have a year of Herceptin, it means your veins will be spared continual pokes. Also with a 'power port', all blood can be drawn from the port and the contract for CT & MRI & PET scans can go into the port. I hated to see mine go.
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thanks, minus two.
I have not seen an oncologist. I still don't even know complete diagnosis as radiologist who did biopsy at first said at least DCIS with foci suspicious for invasive carcinoma. Sent out for prognostic markers.
Then, after the prognostic markers came back he refused to talk with me because he is not an oncologist radiologist. After receiving a copy of it, it reads
Sections hsow scattered foci with solid and cribriform pattern with comedonecrosis. The nuclei are intermediate to high grade. Foci suspicious for invasive carcinoma are present.
Can't wait until Tuesday to get MRI and appt with BS. I am very confused and scared.
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hi CENOK - I am near OKC as well. My surgeon was Dr. Talbert at OU Stephenson!
I'd be happy to connect with you if you are interested. Just message me and we can go from there!
Like already said, I'm so sorry you are here, but you will find a lot of good information and support.
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CENOK - you for sure need to see an MO (Medical Oncologist). I love my BS - but remember, surgeon's cut. The MO will be the one driving the bus and coordinating the team.
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Thanks all for your feedback. As of now, i do have appt with BS Tuesday, after an MRI, and I will certainly ask him about MO.
Do any of you have suggestins for questions to ask BS?
This is what I have so far:
Explain results of stereotactic biopsy, including all terminology on it that I do not understand and what this biopsy means.
Do I need more biopsies....lymph nodes? when? What do they involve?
Does he work with a team? Who?
When do I find out grade and stage.
These seem like such inadequate questions. I just can't think. Of course, if I need chemo, radiation, surgery later, I will have tons of questions and will probably be coming back here for more advice!
Any questions will be so appreciated. I know ot is hard when you don't know my diagnosis, but I don't either except : at least DCIS with additional foci suspicious for invasive carcinoma. ER/PR- HER2++
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Hi cenok2017, We are in the same boat. I just got the results of my biopsie on Dec 28. IDC and ER- PR- but HER+ you are asking a lot of the same questions I have. Thanks for posting.your questions I am so frustrated not knowing what the steps of the diagnosis and treatment process are. I have a surgery appointment and MRI for the 4th and oncologist on the 8th. Good Luck to you. I will be following your posts and progress.Also praying for you.
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Hi LKinKC,
Do you live in KC? I moved from east bay of San Francisco to a small town in Oklahoma. I feel your pain in not knowing exactly what is going on. I am not dealing well with my emotions....
I will follow your posts and please follow mine. Pleas PM me anytime. I am glad you are getting in as soon as you are. With Christmas and New Years I feel like I am treading water. Many on here say we will feel better after we know better diagnosis and treatment plan
I will pray for both of us!
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Hi CENINOK2017
I just moved from Kansas City to a small town about 55miles west of KC.I tried to get an appontment in the closest bigger city Topeka. Could not even get a mamogram or sono until after new year. So I went back to the doctors I know in KC. Now just concerned about the driving for treatments.
I'm not doing well with my emotions either. I know I have a bunch of stuff to do but I'm not doing it. Last few days have been laying around watching TV and looking at the conversations on Breastcancer.org. I will follow you thanks for responding and prayers
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LKinKC
If you do have to have treatment.....radiation or chemo, ask your breast surgeon and Medical Oncologist if there are treatment facilities closer to you so you don't have to drive far. I was told by nurse navigaor (the person who you call as a go between for surgeon and oncologist and who helps set appointments) that if I do need treatment there are cancer treatment facilities all over that can follow my oncologist's directions.
I'm sure i will need treatment. I just pray it has not gone further than the breast. I don't even know if I have IDC as final pathology report does not say for sure. And the radiologist who read final biopsy path report would not call me back because he is not and oncologist radilogist.
I am 68, married, have no children but do have family in Tulsa and OKC. I am so scared but trying to stay positive.
Hope from now until the 4th goes fast for you. Hate, hate the waiting.
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