ER-, PR-, Her2+ Roll call
Comments
-
I also had (notice I say had rather than have, interesting that that’s how I typed it out) stage 1, grade 3 IDC. I had surgery, then taxol and herceptin, then radiation, and I’m still finishing herceptin. I was told that they do chemo before surgery when the tumor needs to shrink. Mine was smaller, and fortunately for me, I had clear margins and was nice negative.
0 -
If chemotherapy is known to be needed then they get at that first (size of tumor, grade, pt age, HER2, node positive). If you get a pCR (pathological complete response) meaning the lump is completely gone and axilla clear after chemo at Surgery your outcome is very good. If while receiving TCHP the lump does not shrink they will switch to something else or if it keeps growing you head to surgery and that’s more worrisome.
0 -
Aussie,
As Minustwo states, it is common. Also, the doctors try to individualize our treatments, but usually we start with the universally, evidence based treatment.
For Stage 2, American Cancer Society (2018) proposes two plans - surgery followed by systemic treatments, such as chemotherapy and immunotherapy, or the neoadjuvant therapy followed by surgery followed by immunotherapy (Herceptin /Perjeta).
Regarding neoadjuvant therapy, American Cancer Society's website (https://www.cancer.org/cancer/breast-cancer/treatment/treatment-of-breast-cancer-by-stage/treatment-of-breast-cancer-stages-i-iii.html) states the following:
Neoadjuvant and adjuvant systemic therapy (chemo and other drugs)
Systemic therapy is recommended for women with stage II breast cancer. Some systemic therapies are given before surgery (neoadjuvant therapy), and others are given after surgery (adjuvant therapy). Neoadjuvant treatments are often a good option for women with large tumors, because they can shrink the tumor before surgery, possibly enough to make BCS an option. But this doesn't improve survival more than getting these treatments after surgery. In some cases, systemic therapy will be started before surgery and then continued after surgery.
The drugs used will depend on the woman's age, as well as tumor test results, including hormone-receptor status, HER2 status, and the score on a gene panel such as Oncotype DX). Treatment may include:
- Chemotherapy: Chemo can be given before or after surgery.
- HER2 targeted drugs: If the cancer is HER2-positive, HER2 targeted drugs are started along with chemo. Both trastuzumab (Herceptin) and pertuzumab (Perjeta) may be used as a part of neoadjuvant treatment. Then trastuzumab is continued after surgery for a total of 6 months to a year of treatment.
- Hormone therapy: If the cancer is hormone receptor-positive, hormone therapy (tamoxifen, an aromatase inhibitor, or one followed by the other) is typically used. It can be started before surgery, but because it continues for at least 5 years, it needs to be given after surgery as well.
Hope that helps.
GIVEITYOURALL
0 -
Hi Aussie. With all the useful info you are reading here, I just wanted to add that even if your lump doesn't completely vanish, you may still have a pathologically complete response (pCR).
My own diagnosis showed a roughly 2cm lump inside a 6.2cm area clouded with cancerous calcifications. (My MRI looked like a dense star field with one larger solid mass.) I had chemo before my BMX and Herceptin after.
The central lump only reduced to 1.5cm by the time they performed my surgery. Not much, right?? And yet I had a pathologically complete response to chemo.
They had said I could've had a lumpectomy; but I had the BMX to avoid radiation and to have balanced reconstruction (all at once).
Hope this helps.
Hang in there!0 -
06Elise,
Your story is extremely interesting and I hope you don’t mind some extra questions. I am looking for clarification. Please don’t feel that you need to answer all my questions, only those that you are comfortable answering.
At the time of surgery, you stated the lump reduced to 1.5 cm. Was this measurement from an ultrasound or an MRI?
In Feb 2016, you had a sentinel node removed. Was this related to the right breast tumor or the left breast tumor?
Also, now that you have been through the entire process and have obtained a mountain of knowledge, how did your surgeon define pathological complete response (pCR) as it related to the 1.5 cm mass? Was it similar to a flat balloon? In other words, the cancerous portion, which was inside some type of membrane, had been eradicated?
I am thrilled that you are doing well and that you had a great outcome.
Giveityourall
0 -
pCR is noted by the pathologist. There is no evidence of breast cancer in the specimen removed by the surgeon. The tumor is gone completely. Chemo destroyed all the cells
0 -
Giveityourall, I'll do my best to explain what the doctors told me...
- At the time of surgery, you stated the lump reduced to 1.5 cm. Was this measurement from an ultrasound or an MRI?
That was a physical measurement, performed on the tissue they removed during the mastectomy.
- In Feb 2016, you had a sentinel node removed. Was this related to the right breast tumor or the left breast tumor?
The sentinel node they removed in Feb 2016 (same time as my chemo port installation) was related to the largest tumor; identified by the radioactive material they injected into my right ductal tissue.
However, I should add that they also injected my left for the big BMX surgery in August. During that surgery, they also removed two sentinel nodes on the left and another (one or two? I used to know...) from my chest. Although my main tumor was very deep (close to the chest wall), I didn't really get the impression that they absolutely needed to remove any lymphatic tissue from that area... but they DID have to notch a rib bone during reconstruction; and this node was adjacent to that rib; and of course they sent ALL excized tissue to pathology for testing.
- Also, now that you have been through the entire process and have obtained a mountain of knowledge, how did your surgeon define pathological complete response (pCR) as it related to the 1.5 cm mass? Was it similar to a flat balloon? In other words, the cancerous portion, which was inside some type of membrane, had been eradicated?
The lump that they removed was still a solid lump of tissue, but it was tested slice-by-slice and proven to be completely BENIGN.
Please realize that I'm a patient, not a doctor... but in this case, I remember freaking out when she told me that I still had a 1.5cm mass! So I asked a lot of questions... and heard the same answer in different ways from my oncologist, my BC surgeon, my reconstruction surgeon, and the pathologist. The cancer was COMPLETELY GONE from all of my tested specimens.
Every other comment I've seen in this forum makes it sound like the tumor will always completely dissolve into *nothingness*, so let me be as clear as I can be:
You CAN still have a mass after chemo and STILL have a pathologically Complete Response.0 -
elise - Thanks for sharing your story. I had no idea you could still have a lump/mass and yet be considered pCR.
0 -
Bstein,
Very good point and great explanation.
Giveityourall
0 -
06elise,
I thank you for clarifying. I apologize for not fully understanding, but now things are much clearer. I think. The 1.5 cm mass was the amount the surgeon removed during surgery. That did not mean this mass looked or was cancerous. It was the amount of tissue the surgeon removed to insure clean margins and simultaneously, a large enough “chunk” to ensure pathologist’s results would be more definitive.
GIVEITYOURALL
0 -
Giveityourall, not quite. The BC surgeon removed everything (BMX = bilateral mastectomy). My boobies were not huge, but they were considerably larger than 1.5cm
My surgeon told me "chemotherapy shrank the central mass down to 1.5cm".
She also pointed to the line in my pathology report that said "pathologic complete response (pCR)"; she explained what that meant, and she told me that was the most critical piece of information in the report.
I do understand your confusion, however, since that same confusion was what caused me to panic in the first place!
0 -
Hi all!!
I was diagnosed with HR-, HER2+ IDC in Dec 2017... a very large 9 CM mass on MRI following diagnosis which grew to 12-14 CM in the 2.5 weeks i had to wait to meet my treatment doctors (by their estimations). I've been through 6 rounds of TCHP (doc lowered taxotere dose after treatment 2 and final treatment was carboplatin-free) and had right side mastectomy a month ago. Pathology at surgery said complete response! I wrote a more detailed rundown of the TCHP and imaging tests and such on the thread about TCHP outcomes for anyone interested.
I will start 6 weeks of radiation week after next. It was good to see other ladies who've been through it here and read all your stories while I was going through chemo, but I didn't manage to start posting until today!
0 -
06Elise,
Got it. So, you were left with a 1.5 cm mass. Literally. Amazing. Great story.
Once again, thanks for the clarification.
GIVEITYOURALL
0 -
duffyzmom- My RO and MO both stated if you tolerate chemo well you can start radiation within 3 weeks post chemo. I have met many individuals with breast cancer who started radiation within 3 to 4 weeks post chemo. I had radiation number 4 today. So far no tenderness and no swelling. I've never had any pain. I don't know the benefits but I was glad to start early whereas I can finish early.
0 -
Hi all! I just wanted to take a moment to welcome everyone who is new to the conversation (especially wlo002, jo6359 & rgail007, all of whom joined really recently).
Sorry you need to be here! But please do find comfort in the fact that we've all "been there" too.
This is a wonderful community
0 -
The issue about radiation timing is that the protocol for treating HER2+ patients now usually calls for neo-adjuvant chemo, chemo before surgery, and rads afterwards. I had my surgery 2 weeks after my last chemo. Then of course you have to heal from that before starting rads.
0 -
I have lost this page and took me just now to read responses. I just finished my re excision last Thursday for my close margin and the result came back and now it’s all clear. But I finally had my consult with my onco and I am doing TCH for 6 cycles. Starting on August 1. I was talking to her to not getting 6 but getting 4 instead but she said she strongly suggest 6 cycles. Then Radiation after chemo treatment.
DATNY- my initial biopsy report was IDC and found it’s a combination after the lumpectomy Last June 1, then I had a re excision July 12. My surgeon said I need all pathology result done and final before treatment could be discussed by onco. The pathology results and re surgery schedule availability are the one causing all the delay for treatment. But I felt like I wanted it too as I’m very scared and and worried about the chemo part.
Minus2 - I wasn’t offered an neoadjuvant because my tumor size is 1cm, and I couldn’t do radiation first because during the time I got my 1st path from lumpectomy (July 11 result) I was ordered re excision. So I don’t think radiation is adviced if the surgery hasn’t healed yet.
I have been travelling with my family in between surgery that I forgot I still need to fight this battle. Can’t wait until it’s over. We have another trip next Friday and though if canceling it but the MO said the very latest (and it’s pushing it) I can start chemo is Aug 1. So I’m going!
Praying and wishing us all best.
0 -
Initially it was believed my tumor was one centimeter. Therefore surgery was recommended prior to chemo. During the surgery, the tumor was larger than expected because it was embedded in the muscle. Fortunately the margins were clear. My oncologist stated if it had been known my tumor was 2.5 cm chemo would have came first. It still worked out okay but things could have gone differently. -2 was great during this very stressful process and provided me with excellent feedback and questions for my surgeon and oncologist.
0 -
Jo,
I am sorry to read that your tumor was larger than expected. However, as with every decision or event, there are positives and negatives. In my case, I wish I had chosen your path. I wish I did NOT undergo neoadjuvant therapy. I wish I had surgery first.... then chemo with the immunotherapy drugs (monoclonal antibody drugs) - Perjeta and Herceptin.
This is my story. Per my March 7, 2018, ultrasound (which, by the way, provides limited views), I had a 2.2 cm lump in the upper right hand quadrant of my right breast (I believe this is where most tumors hang - in the upper quadrants of either breast - by the armpit). On March 8, 2018, I was diagnosed with breast cancer via an ultrasound-guided biopsy: HER2 positive, estrogen negative, and progesterone negative.
Scheduled for six neoadjuvant chemo sessions (my mass measured over 2 cm), I only did five sessions of the TCHP cocktail (taxotere, carboplatin, Herceptin, and Perjeta). I did not do the sixth treatment because after my fifth session, my hemoglobin plummeted to 8.5 - that is very low. It would be unsafe to have surgery below a hemoglobin of 9.0. It would be even better to have surgery with a hemoglobin of 10.0 or higher. So, for my sixth treatment, which was scheduled for July 10th,2018, I underwent ONLY an infusion of Perjeta and Herceptin. The purpose of dropping the taxotere and carboplatin was to eliminate myelosuppression (stopping the bone marrow from producing white blood cells, red blood cells, and platelets). As such, my bone marrow could play catch up and produce a lot of red blood cells and hopefully, increase my hemoglobin level. This did work. My hemoglobin results on my surgery date- July 23, 2018, had successfully jumped to 10.0. For my surgery, I had a nipple sparing and areola sparing double mastectomy (performed by breast surgeon) followed by immediate reconstruction (done by plastic surgeon) with expanders.
Per my breast surgeon, the neoadjuvant therapy had destroyed random bits and pieces of the tumor (my tumor resembled Swiss cheese), but I did not have pathological complete response (pCR). As for my axilla lymph nodes, I had two removed from each side. All four nodes were clean - no cancer cells. Also, my nipple and areola were clean - no cancer cells.
I am glad the tumor is gone. It was an aggressive tumor and should have been removed in March 2018, because the neoadjuvant therapy did not annihilate my tumor. However, I am aware that hindsight is no sight. I can’t turn back the hands of time.
Also, in March 2018, an MRI with contrast reported there was only one tumor. It was in the right breast. The left breast was free and clear of any malignant masses. My March 2018 full body PET scan with an intravenous radiotracer showed no metastasis, Once again, the only detected tumor was in the right breast. Although the PET scan showed only one mass (in the right breast), I am filled with anxiety. I am scared that the stupid cancer cells bypassed my lymph nodes and settled somewhere else - in another organ. I know I am my worst enemy and I need to stay positive, but I am having a hard time quashing my fears. I will work on neuroplasticity and participate in positive self-talk. I need to feel optimistic because it will result in a faster recovery and provide inner peace. Actually, writing about my anxiety has been cathartic.
I must admit that I was surprised that my lymph nodes were cancer-free. I was shocked. Since my initial diagnosis, I have learned to expect the worst. That is sad - to assume the worst, but maybe it is normal.
Also, I need to get out of my house. However, I have two bulbs/drains (Jackson Pratt) on each side of my chest and I don’t know how to conceal four bulbs and four tubes. I have not left my house for five days because I am embarrassed by the tubes and bulbs’ bulkiness. Simultaneously, I bet my “house-confinement” is exacerbating my anxiety.
Although my story is the opposite of yours (neoadjuvant followed by surgery), I made an educated decision to start with the TCHP. Looking back, like you are doing, I wish I had chosen a different route, but I did not. I think I tend to second guess myself and that is not self-love. I need to stop looking back and focus on the most important thing - today.
I will continue to fight and will never quit.
GIVEITYOURAL
0 -
GiveItYourAll - Thanks for sharing your story.
As for the drains, I found a cheap hoodie that had inside pockets and tucked them inside. Or most of the time I wore a larger men's dark patterned sport shirt that wasn't fitted & just pinned the drains to my surgical bra. The drains really didn't show - but I wouldn't have been dressed for a ladies luncheon.
I'm glad I had neoadjuvant TCHP. I did not have pCR, but got clean margins. Still I went ahead with AC chemo after surgery to mop up any hidden/remaining micro cells. I also had radiation. You didn't mention whether you're having rads or not.
You're right. The HARDEST thing is not to second guess. I'm almost 5 years out from my last chemo & surgery. It is really hard to let it go and get on with your life. But...does a loose bowel movement mean mets to the colon? Does shortness of breath mean mets to the lungs? I mostly learned to cope by taking up exercise and alternatively reading a lot of books. Next year my MO will move me to one year check ups. Mixed blessings. I'm thrilled I'll get rid of a stupid doc visit, but will I worry more?
0 -
Giveityourall - I think we all struggle with the what ifs. One thing you said struck me especially no lymph node involvement what ifs? I'm always thinking are there cases where lymph nodes are clear but there is metastatic cancers? I'm a two time cancer in breast patient (my first was not BC but lymphoma) and I'm less than 8 years out from that diagnosis so I always think if there is a chance of metastatic bc without lymph node involvement I'd be that one.
0 -
Preparing for my RO appointment tomorrow- Giveityourall Have you started radiation? I'm wondering how many rads most of us in the ER-/PR- Her2+ usually end up receiving. Originally when I met with him before my lumpectomy he suggested 6 weeks but that standard might be changing. I need to double check my margins but I think all were quite good and I had no lymph node involvement so I'm hoping for the shorter schedule.
Anyone else finishing up chemo and moving toward radiation ?
0 -
Hi duffyzmom. My diagnosis was much like yours. Here in Canada, I received a month's radiation (5 days/week for 4 weeks). If I remember correctly, the last 3 or 4 sessions were "boosts" concentrated on the tumour bed. I think some oncologists in the US are moving to the shorter Canadian protocol for radiation so you might want to discuss with yours. Radiation started one month after the last of 12 weekly taxol infusions and concurrently with herceptin infusions (every 3 weeks for a year). Radiation went well for me, but it did harden and tighten the scar tissue.
0 -
I had rads 5 days a week for 5 weeks. Originally scheduled for 6 but reduced and I didn't have to have boosts. This was a recurrence 2 years after a BMX, so we pretty much hit it with everything.
0 -
Radiation was 5 days a week for 6 weeks for me, with boosts at the end...I started rads while still getting Taxol which doesn't seem very common. I did have to delay Taxol twice due to low blood counts. That was probably because I was doing both at the same time. Skin was extra sensitive, too. Powered through, though! Now just doing Herceptin every 3 weeks.
0 -
Duffyzmom we have same stats, I haven’t finished chemo (actually just started) but when I had consultation with my RO, she told me I will be getting it 5 days for 4 weeks. So 20 total after I finish chemo.
How many cycles did you have with TC? I was debating with my MO that I just want to do 4, but she strongly suggested 6- I think that’s too much?0 -
give it your all- I'm still pleased I had surgery before chemo. It could have easily on the other way. In my case everything worked out fine. The second-guessing is what gets us all the time. Tuesday evening I discovered a rash on my left armpit, the non-affected side. Right away I started thinking oh my God is this a lymph node involvement did my cancer spread to the other side? I took a deep breath and meditated for almost 20 minutes. I had to laugh at myself because I realized I had worn a new sports bra which was rubbing against my armpit. Even though I do not have breasts I still wear sports bras when I run. The bras I had prior to my BMX were. for support. I no longer need support sports bras so I gave them to charity.
I will finishmy 25th radiation treatment next Wednesday. So far, Radiation was uneventful. I believe several of the ladies had written at one time if you have radiation after chemo it's easy. Chemo tends to be a lot more complex with unexpected side effects. There are a few women who do experience difficulty with radiation treatment.
0 -
LivM,
You mean TC+HP, right? They will add H&P and continue them for one year.
TC is well tolerated by many. 6 shouldn't be too different from 4 in terms of side efects.
0 -
LivM - Tuesday will be my 6th TCH (you probably also don't qualify for P since your tumor was under 2cm). 6 rounds is the standard of care so I never really considered going with less. I think 4 would only be advised if you had significant SEs (especially neuropathy) or horrible blood counts. The radiation oncologist says I'm a good candidate for the accelerated whole breast radiation. So I'm planning on 3 weeks of radiation plus an additional week of boosts to tumor sites. My planning sessions is 8/28 so hopefully September will be my month of rads and by October I'm only dealing with Herceptin injections.
Best news from my MOs appointment is I'm scheduled to get my port out August 29th. He says I'll only need to see him every 6 weeks or so during the remaining Herceptin. As far as monitoring, he plans to alternate MRIs with Mammograms every 6 months for the next few years. Is this standard? He implied he might have a problem getting insurance to cover the MRIs but I find that hard to believe. Following my lymphoma insurance was more than wiling to cover PET scans every six months so I'd think Breast Cancer reoccurrence monitoring would also be beneficial.
0 -
Jo6359 - thanks for the encouragement, I’m so glad you’re able to run, I can’t wait till I can psych myself to go back to working out.
Duffyzmom - thanks for the input, I feel like I’m being such a baby, but this nausea and fatigue has drained me the last 2 days. Today is my 4th day post 1st session and thank god I feel better. Good news with removal of port, and congratulations you’re almost done with 6th. Re MRI, I don’t know but my friend who is a breast cancer survivor, she has to pay for her own MRI every other 6 months. She said her insurance only covers MRI and Mamo 1x year.
DATNY- I am only doing TC+H, no P for me. I really hope i can tolerate it. Thanks all for the great info.
0
