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surgery before or after chemo???? her2+

juststace
juststace Member Posts: 14

Hello- im new:)

Diagnosed 3 weeks ago

We have now seen 2 oncologists and have been given 2 options. We need to decide in a couple days-

1. Chemo first AC (4 rounds) TT (4 rounds)- and then surgery (assuming a less aggressive surgery -lumpectomy as the tumor will have hopefully shrunk) and then Herceptin (T) 13 rounds - then radiation and then hormone treatment for 5-10 years. Hoping by doing the chemo first they can quickly kill anything that has moved - although I did a PETscan and know it is where it is supposed to be (maybe a couple in nodes)

2. Surgery first (mastectomy)- then chemo TCH (6 rounds)- and then just Herceptin (10 rounds) and then maybe radiation and then hormone treatment for 5-10 years. (TCH here instead of AC due to the fact that both AC and Herceptin are bad for the heart and they don't want to double up that side affect). Hoping that if they take out the mass then that will take out the greatest risk- and we can deal with anything left behind later in chemo.

Each oncologist is recommending these treatments start in the next 2 weeks. I wish I had a tie breaker! They are both great treatment options- I just do not know which is the right one for me. And it is confusing to have 2 well known and respected oncologists have such strong opinions that differ. Going for a third opinion at this point is not viable- it would take a least a week to get another appointment and I am already close to a month after diagnosis and need to start a treatment. I was able to get a PETscan and have found the the cancer has not spread anywhere else- liver bones etc however they did detect a couple possible lymph nodes.

Also need to consider reconstruction - if I do the surgery first I might want to delay the reconstruction so that we can start the chemo ASAP - Is that just prolonging the process and pain? I am nervous about doing the reconstruction and then going straight into chemo - as will that affect my healing?

If anyone knows anyone that would be able to share anything that would help us make this decision that would be so great.

Comments

  • elainetherese
    elainetherese Member Posts: 1,625

    Hi!

    I had chemo first (AC + Taxol/Herceptin/Perjeta). The advantages for me were:

    1. You could "see" the chemo working as the lump slowly got smaller.

    2. You could tell at the end that chemo had worked. We had done a baseline MRI and PET scan. After chemo, we did another MRI and PET. They showed no active cancer in either my breast or compromised lymph node. These findings were later confirmed after surgery by my pathology report.

    3. Because chemo was so successful, I chose to do a lumpectomy. As a result, I didn't have to worry about reconstruction.

    4. Because chemo took five months, I was able to think through my surgical options more carefully. I think when I was first diagnosed, I just wanted the cancer cut out, even if it meant a mastectomy. After five months of chemo and thinking about reconstruction, I decided that I didn't want to pursue a process that might involve multiple operations and additional complications. (I should note that many women have relatively easy reconstructions; it's just that I have two special needs kids and need to be ambulatory and energetic to look after them.)

    I guess the biggest disadvantage for me re: chemo first was waiting for my surgery. It seemed like I'd never get there! But, I did.

    Best wishes to you; neoadjuvant chemo for HER2+ is a relatively new approach. Some MO's advise it; others do not.

  • juststace
    juststace Member Posts: 14

    thank you so much for this ElaineTherese - helpful to hear success stories of people who have done chemo first. I had never heard of it so am having a hard time understanding it.

    Were you worried about the heart implications with Herceptin and AC? My one doctor thinks the 2 together is too much-

    But I think the AC is more effective?


  • elainetherese
    elainetherese Member Posts: 1,625

    I think if I had a history of heart issues, MO might have considered a different chemo regimen. But, I didn't. My MO did have me undergo a baseline heart scan (MUGA) before I began chemo. Then I had MUGAs every four months through chemo and Herceptin. They showed that my heart was functioning as well as it did before chemo. However, if those scans had revealed a decrease in heart function, MO would have stopped treatment right away. As she always says, "You only have one heart." Some women on the Triple Positive Board did not complete their year of Herceptin because it was affecting their hearts. However, once they stopped Herceptin, their hearts generally recovered.

    Heart damage from AC chemo can take longer to surface. My MO always makes sure to listen to my heart when I visit her office.

    For HER2+ cancer, AC + Taxol/Herceptin/Perjeta and Taxotere/Carboplaitin/Herceptin/Perjeta are both effective chemos. My oncologist prefers AC + THP because more of her patients finish this regimen. (TCHP can cause gastrointestinal distress, e.g., diarrhea.) But many of her patients are older and more fragile. (I was diagnosed at 46.) Younger women do pretty good on both. Best wishes!

  • debiann
    debiann Member Posts: 447

    Has perjeta been offered? It's the latest drug for HER2+. Perjeta is generally only approved neo-adjunctive (before surgery), but some have had it approved for adjunctive.

    I did TCH. My MO discussed adding the "A", but I was worried about the heart effects and he was ok with skipping it.

    I had surgery first, before I even saw my MO. He wold of preferred I had chemo first, he would have added perjeta, which had just been approved for my stage.

    Have they said how large they think your tumor is or if nodes might be involved? That could determine how aggressive you want to be. Your age may also factor into this.

    I had a lumpectomy before chemo, but had close margins so I knew that after chemo I'd need surgery again. During that time I decided to have a double mastectomy with immediate DIEP recon (13 hour surgery). I am happy my chemo came first. I would not have wanted to be recovering and doing chemo at the same time. Chemo alone was bad enough for me.

  • mebekb
    mebekb Member Posts: 1

    I did TCHP, then did a lumpectomy. That was the advice of both my MO and breast surgeon. Then continue Herceptin until a year is up

  • specialk
    specialk Member Posts: 9,211

    juststace - what size is your tumor? Perjeta is FDA approved to be added to TCH (Taxotere/Carboplatin/Herceptin) for tumors that are either 2cm or larger, or node positive. The current approval is for neoadjuvent administration, but some oncologists have sought insurance coverage for adjuvant treatment, or to administer it with AC-TH (Adriamycin/Cytoxan, followed by Taxol/Herceptin). Some have also been successful in getting insurance approval to add Perjeta for tumors that do not meet the FDA approval criteria - i.e., smaller and/or node negative. Either of these chemo regimens, with Perjeta or without, is accepted and successful for treatment of Her2+ breast cancer - choosing which regimen can be dependent of oncologist preference or patient co-morbidity. My oncologist prefers the Taxotere/Carboplatin combination when he gives Herceptin because he seeks to reduce the potential for cardiotoxicity by not administering the anthracycline drug Adriamycin when using Herceptin. TCH (possibly with P) is the regimen favored by Dr. Dennis Slamon, the research physician at UCLA who helped bring Herceptin, a Her2+ game changer, to the market. You should have a baseline MUGA or echocardiogram to determine your ejection fraction (EF) and heart health prior to starting either regimen. I received quarterly echo exams during the year of Herceptin administration. If you elect lumpectomy you will need to add radiation after surgery (usually within about 3-4 weeks), and this is done concurrently with your remaining Herceptin infusions. Depending on nodal status and tumor location you may require radiation even if you elect a mastectomy, or bi-lateral mastectomy. Having neoadjuvent chemo does allow you to devote more thought to what type of surgery you would like, or is appropriate for your situation, and you will not endanger your start to chemo by having healing problems or surgical complications. If you are ER+ you would also start anti-hormonal therapy while you are continuing with Herceptin also. Doing chemo neoadjuvently does allow you to proceed immediately and also lets you know through periodic exams, and ultimately surgical pathology, whether the chemo and targeted therapy was effective. Doing surgery first you end up needing to take that on faith because there is no tangible evidence that it worked, but you have the benefit of knowing the cancer has been physically removed. Wishing you the best!

  • LeslieMemsicMD
    LeslieMemsicMD Member Posts: 1

    A year ago we would say that it didn't matter whether you had chemo before or after surgery in Her 2 neu amplified patients except that pre operative treatment might shrink the tumor and allow breast preservation where mastectomy may have been considered before treatment. However, a new study demonstrates that the combination of 2 different anti Her 2 neu medications works better than just one. Traditionally Herceptin has been the Her 2 neu drug of choice and it is amazing. But adding Perjeta  (pertuzumab) along with Herceptin works even better and at this point, insurance companies ONLY approve and pay for this drug when it is given before surgery. It is then continued with Herceptin for a total year. Takl with your doctors, but Perjeta is a game changer and therefore you should definitely consider neoadjuvant or preoperative chemo. Good luck and take care.

  • specialk
    specialk Member Posts: 9,211

    There are a number of members here that have had their oncologists obtain insurance approval and payment for adjuvant administration of Perjeta - either with TCH or AC-TH, but it is the exception to the rule. Also, for neoadjuvent treatment with Perjeta it is normally given with the neo chemo infusions that contain the taxane drug only, and not continued with Herceptin after surgery. I have seen a few continue it, but again, that is the exception.

  • rainnyc
    rainnyc Member Posts: 801

    My treatment was off-protocol for various reasons: 18 weeks of Taxol combined with Herceptin/Perjeta before surgery. By the time I did have surgery, the pathology report showed NED. My MO was able to convince the insurer to continue with the Perjeta as well as Herceptin after surgery, and I have heard this is becoming more common. I was not advised to do reconstruction at the time of the original surgery as I was to do a course of radiation, but my one-year follow-up with the surgeon is later this fall, and I'm going to raise the subject then.

    Good luck, and don't be afraid to ask more questions; you need to be comfortable with the decision as you will be living with it for a long time.

  • juststace
    juststace Member Posts: 14

    it was 2.5 cm at biopsy but they think now it's 3.5 ish- perjeta has not been mentioned.


    I am hoping to get surgery and reconstruction after chemo and before herceptin.

  • Mommato3
    Mommato3 Member Posts: 468

    I did my UMX prior to chemo. That was the best option for me at the time. There are times when I wish I had done neoadjuvant treatment to see how my tumor responded. My protocol was AC-THP. My MO, like ElaineTherese's, also prefers AC because of the gastrointestinal issues. I was young(er) and healthy so he thought I would be able to tolerate the AC very well. My UMX went well and I healed quickly. My chemo started 4 weeks after surgery.

    Perjeta is FDA approved to be given prior to surgery BUT there are a lot of women who still get it approved adjuvantly. I don't like to see people post that it can ONLY be given neoadjuvantly. There may be women out there that read that and think it's too late to ask for it. There's no guarantee that insurance will pay for it but it certainly doesn't hurt to try. My MO didn't do anything special. They just submitted my chemo protocol (THP) to insurance and they automatically approved it. That being said, I would recommend doing neoadjuvant treatment if possible to ensure that the Perjeta is approved. I would hate for someone to make a decision based on that information and then have insurance deny it.

    It's a tough decision but both of your chemo options work well! Good luck!

  • specialk
    specialk Member Posts: 9,211

    juststace - the most common approach neoadjuvently is to administer the Herceptin and Perjeta (which I would ask for if I were you in light of tumor size and uncertain nodal status since you meet the criteria) prior to surgery with the taxane. What you would normally see with AC-TH(&P) is the AC, every two weeks for 4 infusions, then Taxol with the H&P, then surgery - or - 6 infusions of TCH(&P), then surgery. You would continue the Herceptin, and possibly Perjeta, afterward with either protocol. What is the rationale for starting the most effective drugs after surgery? The targeted therapies are meant to work synergistically with the taxane, and you may not see as much shrinkage or PCR if the targeted drugs are completely separated from the chemo. You can have which ever surgery you decide on during Herceptin - a number of weeks after finishing chemo, you are not limited to starting the Herceptin and/or Perjeta afterward.

  • juststace
    juststace Member Posts: 14

    is there any benefit to doing surgery first and chemo after? thank you.

  • specialk
    specialk Member Posts: 9,211

    Before the approval of Perjeta most of us did do surgery first, the advantage is that the known cancer is removed and your true staging is known via SNB/lymph node assessment. The downside is that there is no remaining physical evidence that chemo and targeted therapy is working because there is no shrinking tumor to look at - you are assuming that the drugs are doing what they are supposed to. With the advent of Perjeta, and most insurers approving it for neoadjuvent administration, those who qualify for it seem to do chemo first and surgery afterward. Your oncologist can inquire with your insurance company to see if they would approve adjuvant Perjeta if you are more desirous of surgery first, but he/she might have to justify that approach.

  • JCS28
    JCS28 Member Posts: 92

    I was in a clinical trial where I had herceptin and perjeta ONLY before surgery, and it totally shrunk my tumor. Then I was able to do taxotere, herceptin, and perjeta after surgery which was an easier chemo. Now I'm continuing herceptin alone to complete 1 year. My insurance did approve herceptin and perjeta before surgery (after the clinical trial but before the surgery, 2 extra rounds), and my tumor was about 1.5-2 cm and node negative.

    If doing chemo before surgery gets you perjeta, then I would weigh that heavily in favor of chemo first. Like others have said, having both herceptin and perjeta together is game changing. And I had NO side effects!

  • juststace
    juststace Member Posts: 14

    I'm in Canada and wondering if perjeta is offered in Canada- any other her2+ Canadians??


    I cannot thank you all enough for your thoughtful answers.

  • specialk
    specialk Member Posts: 9,211

    juststace - here are a couple of threads with Canadians, there may be some members with pertinent experience, but your geographical location may explain the differences in protocol. If you type "Canadian" in the search box on the left more threads come up - look at the sig lines for those posting to see if they are Her2+.

    https://community.breastcancer.org/forum/55/topics/779734?page=63#post_4771372

    https://community.breastcancer.org/forum/55/topics/775263?page=30#post_4772345

  • elainetherese
    elainetherese Member Posts: 1,625

    juststace,

    I read somewhere on these threads that the Canadian guidelines for treatment of HER2+ cancer don't include Perjeta as a recommended treatment because research has not yet shown that it improves outcomes. While Perjeta has helped more patients achieve "pathological complete responses" (situations where chemo has wiped out active cancer), it has not been used long enough in early stage breast cancer patients for there to be studies which show that it has improved survival or recurrence rates.

  • Maya15
    Maya15 Member Posts: 112

    I was reluctant to do chemo first, but my MO and BS told me I had to because the cancer was too extensive to do surgery first (cancer in the whole breast and multiple lymph nodes). Now I'm really glad I did chemo first. I did AC then Taxol/Herceptin/Perjeta before surgery, and now I'm doing HP for a year after surgery. I had a pathological complete response (wiped out all the cancer), and knowing how effective it is does give you more treatment options after surgery. I was able to skip radiation and that makes a big difference for reconstruction because it's harder to do with radiated tissue. On the other hand if chemo is not as effective as they'd hoped, they can then give you a different chemo or other treatments after surgery.

    I haven't worried about heart problems. They did an echocardiogram before starting and I have one every 3 months. If there was any sign of trouble, they would stop the treatment. AC is given first separately from Herceptin precisely to avoid heart problems from taking both at once.

    For reconstruction it depends on what type you want and also whether you will need radiation. If you do, the PS will probably advise having a tissue expander and delaying recon until you've healed from radiation.

  • juststace
    juststace Member Posts: 14

    thank you for all of your feedback! amazing!

    I decided to do chemo first- and I started yesterday on - Docetaxe carboplatin herceptin I will do that every three weeks for 6 treatments. and then surgery- depending on how much the tumor shrinks and possible radiation. another 10 herceptin treatments and then hormones. seems like s long journey- but I felt grateful and peacefull yesterday and today feel good.

  • specialk
    specialk Member Posts: 9,211

    juststace - you will likely start the anti-hormonal therapy while you are still receiving Herceptin. If you don't need rads you will probably start it about a month after surgery - if you require rads they usually start it about a month after surgery, and some MO/RO teams advocate starting anti-hormonals after rads, others will start after surgery and during rads.

  • stephincanada
    stephincanada Member Posts: 29

    Hi all

    Juststace: I am also in Canada and am wondering what your doctor said about taking Perjeta?

    I have already had surgery, but am thinking about taking four doses of Perjeta and seeing if my insurer will pay for it. This approach has not been recommended by my medical oncologist, because he says that pathologic complete response in the neoadjuvant setting does not always translate into better disease free survival or overall survival. (You can google "Eric Winer" for more on this point.) I am really struggling with my decision.

    Because Perjeta is a relatively new drug, I am worried about potential side effects. My prognosis with chemo and Herceptin is already very good. I don't want to be greedy and push my luck for a few more percentage points, but at the same time, I want to do everything I can to live! The aggressive nature of my er/pr negative, HER2 positive, grade 3 tumour terrifies me.

    Any guidance from you all would be most appreciated!

    Stephanie

  • juststace
    juststace Member Posts: 14

    we have a similar diagnosis. good.... and hard;)

    my doctor and I asked 2 said no to perjeta- partly thy don't think there is enough evidence for long term effects and its soooo expensive in Canada. I think each bag was 1200.00 and I was going to need 16.


    I started chemo 3 days ago with herceptin. hopeful.

    good luck to you- if you want to talk with me on the phone I am willing. I am a crazy researcher.

  • juststace
    juststace Member Posts: 14

    I wanted to follow up here....

    I finished chemo- and my tumor shrunk from 7cm to 5mm

    Initially I was told I would need a masectomy and now I need a lumptectomy-

    I am super happy with my decision. Although it was hard to make- and trust.

    I will continue now for 10 treatments of just herceptin.

    best of luck to those of you in the same situation. xo

  • elainetherese
    elainetherese Member Posts: 1,625

    Hi!

    My active cancer in my breast and compromised node were wiped out by chemo, and I ended up choosing a lumpectomy. I just didn't want to have to deal with reconstruction (which can involve multiple surgeries). Also, I don't mind getting mammograms, so that was not a big deal for me. I always figure that if I have a local recurrence, I can always go the mastectomy route. But, for now, I'm happy. Best wishes!