ER-, PR-, Her2+ Roll call
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I forgot to tell you I found a good list of questions for doctors and terminology on here somewhere. I hope I can find it to share w you. It was by Marisa Weiss, MD.
I found it on this website. I have to go to bed for tomorrow's appt but will try to find it on way to OKC.
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CENOK2017 - I was diagnosed with ER- PR- HER2/neu 3+ IDC on September 6, 2017 and didn't have surgery until October 11 because of BS schedule and something I had planned in early Oct. Even though the HER2 makes the cancer more aggressive, a delay while treatment options are explored is okay. My MO wouldn't see me until after surgery, but I started on Taxol/Herceptin on Nov. 6, 2017. According to my MO that's the treatment of choice these days, 12 weekly treatments. I'm taking the paclitaxel, not Taxotere, which is more expensive and the drug that you see the late night lawyer ads about suing for permanent hair loss.
Good luck with your MRI & BS appointment tomorrow.
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ExTexan,
Thank you and keep in touch. Interesting how some centers recommend surgery first and others chemo first. Was your surgery a lumpectomy. I know all our cancers are just a little bit different and we must trust the experts advice.
All my best to you.
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Dear Cenok2017:)
Dr Talbert is very well thought of in OKC. From what I hear she is very good. What town are you in? I’m in Edmond and use Mercy. There is another lady on the boards from Edmond also. I think there are quite a few Okies on here. I do not know any of the Oncologist at OU..so I’m no help there. Feel free to pm me if I can help you in any way.
It is kind of irritating the Radiologist was not very helpful. I would have thought he would have said if tumor was outside of duct.
If you haven’t done so, start a big binder for all your reports and notes. I get copies of all of my cds of CAT scans...you never know when internet systems can go crazy.
Many people get second opinions before choosing a Dr. they hit it off with. I’m sure OU does rumor board review so in truth you get second opinions that way.
Wishing you best of luck
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CENINOK2017 and LKinKC I remember that feeling. Waiting for results and treatment to start is hard. But once it starts, you might find things move pretty quickly and feel less anxious, knowing you are doing everything you can.
Waiting is also part treatment because of all the appointments and of the healing process, but I found it quite doable. Learning how to meditate and walking helped. I hope you get your results soon and get treatment locally. You are both in my thoughts.
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The thing you need to think about is what type of surgery do you want. The decision to remove a whole breast or a part of the breast is determined by the size of the cancer (your preference too). What size is the Cancer on the ultrasound report and where is it in our breast? Can they remove a lump of tissue and leave you with a nice breast? If you have a lumpectomy you will need radiation to the remaining breast tissue. Do you live close enough to have 16 fractions of radiation afterwards? If your lymphnodes looked ok on imaging you will have them sampled during your beast surgery after locating them pre-op “sentinel lymphnode localization”.
If the lump is large and your lymph nodes look like they are involved on imaging you should have a FNA of the node before any surgery. If the node is positive for Cancer you will have metastatic screening. If there is any chance you would need chemo they would/should do it first and then surgery to see the tumor response. This is only if they fear spread because you will get chemo anyway.
My guess is at 68 you have a small cancer and will do well with a lumpectomy/radiation and because you are HER2-POSITIVE you will require 4 rounds of chemo and 17-18 Herceptin treatments (every three weeks for about a year).
Good luck
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To add to bstein's comment - the standard of care for HER2+ at this time is chemo with Herceptin before surgery. That said, it is not common to test for HER2+ if only DCIS is diagnosed. If you're not sure about a diagnosis, it is important to clarify with your doc before surgery. And see an MO or get a second opinion. Surgeons cut. Medical Oncologists run the bus
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Hi everyone! I was just informed today that the rest of my biopsy results came back from my core biopsy and I am ER-, PR-, HER2+. The pathology report gave it an intermediate grade and there was no visible evidence in my lymph nodes on ultrasound. My tumor measures 8 cm...and I am scared to death! I see a surgeon on Monday, but this waiting is killing me! It seems time is standing still to me. I'm sorry to have to join this group of ladies, but at the same time I am glad I can come here and read about other's treatment as it helps me prepare for my appointment.
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smickey - please see my post just before yours. By all means, meet with the surgeon and then request a meeting with an MO (medical oncologist) before you do anything. Or set up an MO appointment now if you can. Sorry about the waiting. i know it's the worst part.
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Hi Smickeyrn,
You remind me so much of myself. I am terrified, too, i alternative between crying and sleeping. i just found out yesterday that my tumor is 11x 7 x 4..am awaiting a call from last biopsy to see if invasive. The doctor has pretty much prepared me to expect invasive.
Last biopsy said ER-/PR- HER2+++
I am 68, live in a small town in Oklahoma so go to OU Stephenson Cancer Center in Oklahoma City, OK
Let's keep in touch as we travel this long road.. Feel free to private message me anytime. People on here, who are further along in their journey are very helpful.
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smickeyrn,
I somehow deleted the first post I wrote you.
Your feelings remind me so much of mine. My MRI showed a huge tumor. 11cm X 7 x 4. I nearly fell off my chair and am terrified. I have ER/PR- HER2+++ which I understand is agressive.
I am waiting for a call to determine if invasive but dr has pretty much prepared me that it will be.
I certainly understand how the waiting feels. It is awful. I cry, pray, sleep, repeat
My BS says chemo first to shrink tumor, then mastectomy.
Hang in there! Private message me if you would like. I live in a small town in Oklahoma and go to Stephenson Cancer Center.
I am 68 but I don't feel like it and certainly want more years!
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Hello all,
My mom met the MO for the first time since starting THP for er-,pr-,her2+ Stage IV cancer (small met on lung and mets to liver). Right breast had 5cm tumor at Dx, left breast is clear at the moment.
Today the MO examined mom, after 2 infusions thus far (THP first week and just T last week). The MO stated she can feel that the tumor has changed shape and has moved and is now estimating it to be about 2.5cm down from 5cm.
Is this a good start to treatment? Is this promising to her cancer taking to Herceptin and Perjeta and Taxol? Should it have shrunk more by this time? MO just said she is "really happy and everything looks good" but I don't know what that really means... Just a little scared..
Darren
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MichyMom: That's great news! Your Mom's tumor is responding to treatment. I don't think you can ask for a better outcome at this point and she has only had two infusions. Be patient and focus on this positive news.
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Hi Darren. Hormone negative HER2 breast cancer responds especially well to chemo and Herceptin and that is clearly what's happening with your Mom. Herceptin is immunotherapy and much milder chemo and a big breakthrough in the treatment of HER2 positive breast cancer. If your Mom is stage IV, she may be kept on Herceptin alone for several years after chemo to prevent progression or recurrence. You'll find in these forums women who were diagnosed with stage IV HER2 breast cancer many years ago who are living full lives thanks to Herceptin. Your Mom is lucky to have your love and support, especially during treatment. My best wishes to you both in the coming year.
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Sounds like great news Darren! Many with large tumors don't notice changes until rounds 4 or 5! Wishing your mom the best
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Terrified-new DX-2 tumors same breast I was diagnosed with invasive breast cancer. 1.2 cm on December 8th 2017. Since then I've had an bilateral breast MRI which shows another tumor on the same breast which turned out to be cancer. Both cancers are approximately 1.2 cm each. I received my test results this morning and PET/CT showed the 2 known cancers. Prior to the second cancer occurring I was scheduled for a lumpectomy on January 5th. My surgeon cancelled the surgery for January 5th because he wanted the results of the PET/CT scan after diagnosing the second cancer. He wantsto discuss treatment options with me on Tuesday. I'm overwhelmed. Are we discussing mastectomy versus lumpectomy. Or is there no choice and I need a mastectomy now. E and P - and Her2+. This month has been the worst month of my life.
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jo - the current standard of care for HER2+ cancer seems to be chemo first with Herceptin. Then surgery when the tumor(s) have had a chance to shrink. The treatment is quite successful so try not to panic. Yes, it may mean double mastectomy down the road, but try not to jump to conclusions. Waiting is the hardest. Try to find something to occupy your mind until Tuesday - like binge watching TV
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Hi,
I was diagnosed with DCIS in December, had double mastectomy December 20th, 2017 and hoped that would be the end of it for me. Unfortunately, pathology report came back with a small (0.7 cm) IDC tumor ER/PR -, Her2+. SLN are clean. Clean margins. I meet with the MO tomorrow morning. I'm really scared. Do they also recommend radiation for this type of tumor or should I just expect chemo and Herceptin?
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Hi Rooney26! So sorry to hear. I haven’t had surgery yet, chemo first. I will learn more about surgery soon. Expecting lumpectomy and sentinel node biopsy. I am scheduled for 30 radiation treatments, too. I’m not sure about a difference with mastectomy. Are your lymph nodes positive? Radiation is the “clean up crew” so I’d definitely do if recommend. My mom was hormone receptor positive, HER2 negative and had mastectomy, chemo and radiation. Sorry I’m not super helpful. Just want to let you know I’m thinking of you, and what my experience has been. Hugs
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my MO did not recommend chemo first. He felt the tumor was so small it was best to do the surgery first then chemo. He isn't aware of the second tumor yet. I am so confused. One of my closest friends was diagnosed with breast cancer in 2002 had lumpectomy clean lymph nodes 38 radiation treatments and her cancer has not returned in 15 years. That's what I want.
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How do you stay positive. I live alone so at night my imagination runs wild. During the day I'm busy with work and therefore I'm focused on something other than myself. I started power walking again. I'm not running because sometimes I need ibuprofen for my knees after a good run. And with a possible surgery dates on the horizon ibuprofen is out of the picture. Reading positive feedback is very helpful. Thanks
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did your physician recommend your double mastectomy? I've been reading about many women choosing mastectomy as a preventive tool. I'm newly diagnosed myself. Everything is very scary. But the support from this forum has been great. It does help calm my nerves.
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My MO told me Hormone negative and HER+ responds extremely well to chemotherapy. Do what I'm doing now. Take some deep breaths and try to focus on the positive. I know it isn't easy. Deep breathing and meditation has helped me during the past month. There are moments when I start crying uncontrollably for a few minutes and then regain control and move on to my next task. Hang in there.
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jo - lots of us live alone and it's a struggle to "live" each day rather than worry each day. It get's easier once you have a treatment plan set & are moving forward. I know that sounds weird, but it is true. As I said before, with HER2+, in the US usually you'll have chemo first, but in any case you'll have Herceptin with the chemo and that has been a real positive game changer. I think you see the MO again tomorrow? You need to figure out what the new diagnosis is, are their tumors in both breasts, is one DCIS and the other IDC, or are they both the same, do they know if any nodes are involved? If you're hormone positive, what stage & grade have they determined?
If you have a mastectomy, sometimes you can avoid radiation if it's DCIS. And it is your choice if you want a double mastectomy whether it's for symmetry or because you don't want to deal with more fears down the road. If you have a lumpectomy, radiation is definitely in play.
Take a deep breath friend. If you aren't getting answers from this MO, definitely schedule a second opinion.
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Hello,
Have any of you been diagnosed with ER/PR- HER2 + that is also diagnosed a tubular?
My first pathology was ER/PR- HER2+
Supposedly my final path report is tubular but my tumor is huge and slightly ER/PR+ nad HER2+
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my surgeon recommended a right mastectomy because the two tumors were to far apart for a lumpectimy. He also recommended a double mastectomy. He felt the tumors were very small but aggressive and it would be best to do a double mastectomy. I have not made a decision yet. Surgery is scheduled for the 29th of January. He's also recommending reconstructive surgery but I'm really not interested in experiencing additional pain. Single versus double mastectomy any thoughts
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IDC R breast, 2 tumors 1.2 cm each. BRCA negative. I met with my surgeon today. I definitely need a right mastectomy but he is also recommending a bilateral mastectomy due to the aggressiveness of the tumors. Both tumors are in the right breast they are equal size 1.2 centimeter they are too far apart for a lumpectomy. When I have the surgery my lymph nodes will be tested. And I'm supposed to start chemo approximately one week after surgery. A port will be put in on the day of my surgery. I'm not sure if I want a double mastectomy. I'm not sure about reconstructive surgery. Im not sure about a lot of things. Feeling better with a plan of action. Single versus double mastectomy that is the question
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it seems as if your mom is doing great.
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jo-my local team recommended chemo first, but the Dr. from Dana Farber, where I went for second opinion, stated that with mastectomy it does not matter if chemo is before or after surgery. However, with lumpectomy chemo is always first, to reduce the size of the tumor. At no point I was recommended double mastectomy, although my doctor did acknowledge that because my younger age (mid 40s) I will have a longer time to worry about cancer in the other breast (so I plan for BLM). I have two hormone negative Her2+++ tumors, the largest being 1.5 cm, grade 1, along with multiple DSIC sites.
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You have given me a lot to think about. For myself, I just dont know if its the right decision to remove both breasts. I know I dont want reconstructive surgery even though my surgeon is pushing it. He believes because I already have implants the process will be much easier for reconstructive surgery. I regretted the implants from day one.LOL my major concern is single mastectomy vs. Double mastectomy. I know I have to be patient for the node dissection. I am feeling better overall because at least there is a plan of action now.
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