Looking for others who had chemo 1st

Linda Pearl
Linda Pearl Member Posts: 3
I was diagnosed with HER2 breast cancer in January and opted to have chemo 1st. My July 8 MRI showed no cancer, but surgery is being planned. Trying to decide between lumpectomy or mastectomy. Not sure which is best option. Would like to hear from other HER2 patients, especially if you had chemo first. Thanks!

Comments

  • Megan M
    Megan M Member Posts: 3,000
    Hi Linda Pearl and welcome
    Hi Linda Pearl and welcome to the club no one wants to join. But since you are here now, you will be surrounded with lots of support, help and encouragement.

    I had a lumpectomy with rads and no chemo. But, I wanted to post to wish you good luck.


    Congrats on your clean MRI! I am ER and PR+ and HER2-.


    Hugs, Megan
  • mamolady
    mamolady Member Posts: 796 Member
    Linda,
    I had chemo first. My

    Linda,
    I had chemo first. My doc said that way she could be sure the chemo was working by checking the masses. I opted for bilateral mastectomy for a couple of reasons. Family history, the mammo didn't pick up the cancer and the right side would have to be a mastectomy anyway.

    I am not HER2 positive but I don't know how much that matters.

    Cindy
  • smalldoggroomer
    smalldoggroomer Member Posts: 1,184
    Good morning Linda Pearl,
    I had IBC ( Inflammatory breast cancer ) Had chemo first to shrink the tumor ( 2 1/2 by 3 inches ) It worked. I had surgery and they couldn't find it at all NED. I then had Rads to make sure. But have been deemed cancer free. My chemo was over ( except herceptin ) last Oct. Had surgery Nov 1, 2010 and no problems so far. And I was told that IBC is the hardest to get rid of and the most likely to come back. But there is always a exception to the rule. My question is how would they do a lumpectomy if there is nothing there?? Personally I chose mastectomy because if by any chance there was one cell left that could grow I didn't want to do this again if I could help it. So I opted to do what ever it took to get rid of it completely Good luck and keep us posted. take care Kay
  • skipper54
    skipper54 Member Posts: 936 Member

    Good morning Linda Pearl,
    I had IBC ( Inflammatory breast cancer ) Had chemo first to shrink the tumor ( 2 1/2 by 3 inches ) It worked. I had surgery and they couldn't find it at all NED. I then had Rads to make sure. But have been deemed cancer free. My chemo was over ( except herceptin ) last Oct. Had surgery Nov 1, 2010 and no problems so far. And I was told that IBC is the hardest to get rid of and the most likely to come back. But there is always a exception to the rule. My question is how would they do a lumpectomy if there is nothing there?? Personally I chose mastectomy because if by any chance there was one cell left that could grow I didn't want to do this again if I could help it. So I opted to do what ever it took to get rid of it completely Good luck and keep us posted. take care Kay

    Chemo first, then surgery, then rads
    I'm not HER2+ but the docs felt the chemo first was the best option both to reduce the size of teh tumor and to try and head of the mestasis. It worked! My surgeon offered me the lumpectomy option but I went "conservative" and still had the mastectomy. Three of teh nine nodes he removed showed involvement but I've had a clean PET scan since and and clear mammogram. (Just to clarify, I'm E+.)
  • cavediver
    cavediver Member Posts: 607
    Chemo first (3 infusions) to
    Chemo first (3 infusions) to shrink the tumor (was 8.6 cm)...and it did work, Then had mastectomy, then 5 more chemo infusions, followed by rads. I personally agreed with my onc and wanted to do the most aggressive treatment I could to insure as best as possible all those killer cells were out of me. Good luck with your treatment and the choices you make. Hugs
  • bikergirl
    bikergirl Member Posts: 3
    looking for others that had chemo first
    Hi Linda pearl,
    I had two different types of cancer. I had ductal on one side (her 2 pos) lobular on the right side ( er pos) I think chemo first was the best thing. I have had no infection and no problems with reconstruction. I had to have mastectomy on the right. But I could have had lumpectomy on the left. Having an excision on the right to begin with I knew what a lumpectomy might look like. on the bottom you can't really tell on the top wich it would have been probably not so good. So I had bi-lateral. And I didn't need rads because I kept no tissue. But with mast. your breast is gone. THere are permanent problems you can have with mast. Lymphodema. I don't have it, but it can happen at any time. You have to decide what will you be more comfortable with. With lumpectiomy sometimes you can't tell with a bra or you can use a form. With mast there are health isuues and reconstruction to deal with . You don't have to have reconstruction. I am still happy with my decision.I have implants and I am going to add nipples this fall. Reconstuced breasts will not look like or feel exactly like the real ones, they cannot be replaced. But I couldn't keep the one at all. Good luck to you in your decision! I am a fan of chemo first.
    Bikergirl
  • Rague
    Rague Member Posts: 3,653 Member
    Neoadjunct here too
    I'm IBC (Inflammatory BC) so there wasn't a choice rather or not I had neoadjucnt Chemo or the type of surgery. My understanding is that the HER2 status has nothing to do with rather or not neoajunct Chemo is needed - but rather the type of cancer and apparent stage/size. Not sure though, I'm HER2- so not an issue for me, ER+ though.

    My surgeon refused to consider surgery until chemo was done to try to shrink and get margins. (IBC does not usually present itself as a 'lump' with margins but rather as bands or nests with no clear margins.) I did 4 A/C (2 weeks apart) and 2 weeks after last A/C had a modified radical mastectomy - again no choice. 3 weeks later I started 12 weekly Taxol. A week after last Taxol started 25 Rads and a week into rads, I started Femara for 5 years - that was 1 1/2 yrs ago and doing great.

    Susan
  • NJMom10
    NJMom10 Member Posts: 176
    Had chemo first
    I am not HER2 pos but had chemo first to shrink a 6 cm tumor. 4 rounds of AC and 4 rounds ot Taxol, followed by lumpectomy (chemo shrank tumor to 3 cm, had surgery, clean margins, but still 2 postive sentinel lymph nodes) and 33 rads. I am just 1 month out of rads but doing well. As for lumpectomy vs. masectomy, I was given the choice, but my surgeon said she would not recommend lumpectomy if she didn't think I would be ok. Good luck. Barb
  • linpsu
    linpsu Member Posts: 747
    NeoADJUVENT chemo
    I had neoadjuvent chemo before surgery because of the size of the tumor and the aggressiveness - it was 8 cm and I'm triple negative. The chemo shrunk it to .5 cm, so it did its job. I had 4 A/c then 4 Taxol. Hope this helps. Linda
  • sea60
    sea60 Member Posts: 2,613
    Hi Linda,
    I was Estrogen and HER2 positive and was given the Chemo first. Then I opted for a bilateral!

    Hugs,

    Sylvia
  • VickiSam
    VickiSam Member Posts: 9,079 Member
    sea60 said:

    Hi Linda,
    I was Estrogen and HER2 positive and was given the Chemo first. Then I opted for a bilateral!

    Hugs,

    Sylvia

    Her2 positive, DCIS---- Lumpectomy, Chemo then on to
    my bilateral mastectomy with tissue expanders.

    My story:
    I equate my breast cancer journey, much like a collalso roller coast ride! So many highs, so many lows!! Emotions all over the map, changing by the hour.

    As a 2010 survivor of chemo to reassure you that it's not that bad. While there is plenty to be scared about with any cancer diagnosis, try not to be scared -- and the more positive and relaxed you can be, the better all your surgery and treatments may go. Many knowledgeable people have been involved in helping determine the right treatment for each of us, because we are all different, and new treatments and studies are coming out regularly.

    My suggestion ... Information and foreign jargon is talked about during chemo sessions, and most Oncologist will see you, after your infusion has finished .. if not him/her then the PA -A tape record comes in handy .. record the conversation, so you can use it as a reference. Notebook for taking notes .. and writing down all questions you may have -- plus you have concerns, please write them down and address them during your Oncology appointment.

    With all chemo therapy infused drugs .. there are side efforts, and many of us WARRIORS .. suffer from 1 or 2, while others suffer a great deal.

    I had taxotere, carboplatin, and herceptin ... I did suffer with mouth and throat sores (Tom Natural toothpaste helped); the steroids and other meds helped with my nauseated before and during chemo .. after chemo infusions -- nausea plagued me for several days (everybody is different -- just my case, and my body) I did suffer with fatigue and bouts and constipation issues - please do not hesitate to call your Oncologist in attempts to find relief.

    Hydrate, rest, and hydrate some more. Small meals can often help with nausea. I also splashed / flavored my never ending water consumptions with crystal light, lemonade, cranberry juice or apple juice. Herbal tea worked in the evenings, for me. .. drinking plain water endlessly, got a little boring for me.

    Lastly, please put your Oncologist telephone on speed dial .. and call when any and all concerns - regardless of time of day or night!

    Strength, Courage and Hope.

    Vicki Sam
  • Gabe N Abby Mom
    Gabe N Abby Mom Member Posts: 2,413
    Like Smalldoggroomer and
    Like Smalldoggroomer and Rague, I was diagnosed with IBC, but it was triple negative. So yes, chemo first. Six rounds of TAC, then a bilateral mastectomy (no reconstruction for at least a year), and then radiation treatment. My surgery choice was to have both removed or just the cancer side.

    In my opinion, some things to consider in your decision are...which will give you the better long term result? What is your doc recommending? Why? What would your doc recommend for his/her mother/sister/daughter? How do you feel about reconstruction/prosthesis, and what are your options here? Will lymph nodes be removed? (If so, be informed about lymphedema risks.) Will you do radiation either way? How important is your breast in your self image/self esteem? How does your partner/husband/lifemate feel about lumpectomy vs mastectomy? Do you like your breast shape/size the way it is now? I'm sure there are other things to consider as well that aren't coming to mind right now.

    The decision you face is very difficult, because we can't see into the future. So there is not a good way to decide which is better. It really comes down to what is right for you, what YOU feel is best.

    Whatever you decide, you'll get support here. We'll answer questions, listen to you vent, share your joy and triumphs, laugh with you...just plain ole be there. Please come back and let us know what you decide, and when your surgery is scheduled.

    Hugs,

    Linda
  • mruczko
    mruczko Member Posts: 110
    Chemo first
    Linda:
    I was diagnosed with Stage IIB, HER pos., Grade 3 (most agressive)cancer, left breast Oct. 2009 with 2 cancerous lymph nodes. Once lump was 3.5 cm, one .9 cm (2.5 cm - 1"). My oncologist scheduled me for 6 months chemo, 3 months weekly infusions of Taxol plus Herceptin, 3 months a drug combination of Epirubicin, 5FU, Cytoxan every 3 weeks, plus weekly Herceptin. Since I have a history of irregular heartbeats I had echocardiograms every 3 months. At the end of chemo PET scans as well as mammogram showed no evidence of cancer. Originally I was told that my only option is a mastectomy, but since I responded so well to chemo it was decided I was a good candidate for a lumpectomy followed by radiation. My age figured in this decision as well - I was 77. Still, I had to have surgery, according to the oncologist/surgeon, "we do not know what still lurks inside your breast/lymph nodes until we open you up and take a look". I had surgery May 2010. The tissue and lymph nodes were then examined by the lab, 5 days later I had a call from the surgeon - good news, no cancer was found. Had to continue with Herceptin, which I finished Nov. 2010. Our type cancer is more agressive and Herceptin is one of the major weapons in our arsenal, but we must be sure it does not attack the heart, hence the importance of regular echocardiograms. I thought that the protocol set up for me, i.e. chemo/surgery/radiation was the common route and am surprised to hear it is often the other way around. Next time I see my oncologist I'll ask him why he decided on this route.
    Many hugs,
    Marlene
  • Linda Pearl
    Linda Pearl Member Posts: 3
    mruczko said:

    Chemo first
    Linda:
    I was diagnosed with Stage IIB, HER pos., Grade 3 (most agressive)cancer, left breast Oct. 2009 with 2 cancerous lymph nodes. Once lump was 3.5 cm, one .9 cm (2.5 cm - 1"). My oncologist scheduled me for 6 months chemo, 3 months weekly infusions of Taxol plus Herceptin, 3 months a drug combination of Epirubicin, 5FU, Cytoxan every 3 weeks, plus weekly Herceptin. Since I have a history of irregular heartbeats I had echocardiograms every 3 months. At the end of chemo PET scans as well as mammogram showed no evidence of cancer. Originally I was told that my only option is a mastectomy, but since I responded so well to chemo it was decided I was a good candidate for a lumpectomy followed by radiation. My age figured in this decision as well - I was 77. Still, I had to have surgery, according to the oncologist/surgeon, "we do not know what still lurks inside your breast/lymph nodes until we open you up and take a look". I had surgery May 2010. The tissue and lymph nodes were then examined by the lab, 5 days later I had a call from the surgeon - good news, no cancer was found. Had to continue with Herceptin, which I finished Nov. 2010. Our type cancer is more agressive and Herceptin is one of the major weapons in our arsenal, but we must be sure it does not attack the heart, hence the importance of regular echocardiograms. I thought that the protocol set up for me, i.e. chemo/surgery/radiation was the common route and am surprised to hear it is often the other way around. Next time I see my oncologist I'll ask him why he decided on this route.
    Many hugs,
    Marlene

    Thanks for the support
    Thanks for all the responses. I think only someone who has been through this already has any idea what all is involved. Marlene, your case sounds almost identical to mine. I even have some minor heart issues, too, so they are watching it closely while on the herceptin. We met with the surgeon last Tues. and he started off saying I needed the mastectomy, but about halfawy through said I could have a lumpectomy with the same result in the end. They put clips in when they did the biopsies, so they know where the tumor was, even though it is now gone. We met with my oncologist on Thurs. He had kept telling me the chemo was working so well I could probably have the lumpectomy, but towards the end of the appointment said I might need the mastectomy after all. My husband told him they needed to get on the same page, at least in the same room with us. So Monday morning we have an appointment with both doctors at the same time. Yesterday they were supposed to bring my case in front of the "tumor board" they have at the clinic to get insights from other doctors. I just hope we can get a clear plan that will have the best possible outcome. I don't want this to ever come back! I was considering having reconstruction if I had a mastectomy. I'm 59, but we do a lot of swimming and boating. After meeting with the plastic surgeon, tho, I'm not sure if it would be worth it or not. None of it looks like much fun and what if there are complications from it. I missed two months of school (I teach high school math)at the beginning of last year due to a broken ankle. My classes were so far behind, I would hate to do that again. My husband is ok with me not having it--he's more of a "butt" man than a "boob" man! I'll let you know what we decide. Thanks again for all you help. Linda Pearl
  • mruczko
    mruczko Member Posts: 110
    chemo first
    Linda:
    Just one more thing - I did not know until I woke up from surgery if I had a lumpectomy or mastectomy. I had to agree that I would leave this decision up to the surgeon, depending on what he'd find when he went in there. My first question to the nurse was - do I still have my breast? the younger a pationt the more agressive the treatment, at my age lumpectomy/mastectomy survival rates are just about equal.
    Keep us informed, my dear, and all the best to you.
    Many hugs,
    Marlene
  • Linda Pearl
    Linda Pearl Member Posts: 3
    mruczko said:

    chemo first
    Linda:
    Just one more thing - I did not know until I woke up from surgery if I had a lumpectomy or mastectomy. I had to agree that I would leave this decision up to the surgeon, depending on what he'd find when he went in there. My first question to the nurse was - do I still have my breast? the younger a pationt the more agressive the treatment, at my age lumpectomy/mastectomy survival rates are just about equal.
    Keep us informed, my dear, and all the best to you.
    Many hugs,
    Marlene

    We've decided.
    Hi everyone, We finally got to talk to both the surgeon and oncologist at the same time. A miracle in itself! They agreed that my long term survival rate would be about the same with either the lump. or mast. With the lump. tho, I would have to have radiation and then close monitoring to make sure it did not return. If it did come back, I would then have to have a mast. With the mast., there is a chance I will not need radiation and of course there won't be any chance of it coming back in the breast. I was hoping to get by with just a lump. and keep my breast, but I really don't want to have to worry about whether it it is going to come back or not. My husband is also worried about me having radiation because of my heart issues and it being my left breast. What a tough decision! We aren't good at deciding anything. We lived out of cooler for 4 weeks because we couldn't decide which refrigerator to buy. As Jimmy Buffett says, "Indecision may or may not be my problem." In the end, I hated to, but I opted for the mast. Since I've already had chemo and am still taking herceptin, I will wait until mid-Sept. to have the surgery so I can get my school classes started before having to take time off. Thanks for all your help and understanding. Hope you are doing fine, Marlene. Luv, Linda Pearl (Pearl is just my nickname, by the way.)
  • MAJW
    MAJW Member Posts: 2,510 Member

    We've decided.
    Hi everyone, We finally got to talk to both the surgeon and oncologist at the same time. A miracle in itself! They agreed that my long term survival rate would be about the same with either the lump. or mast. With the lump. tho, I would have to have radiation and then close monitoring to make sure it did not return. If it did come back, I would then have to have a mast. With the mast., there is a chance I will not need radiation and of course there won't be any chance of it coming back in the breast. I was hoping to get by with just a lump. and keep my breast, but I really don't want to have to worry about whether it it is going to come back or not. My husband is also worried about me having radiation because of my heart issues and it being my left breast. What a tough decision! We aren't good at deciding anything. We lived out of cooler for 4 weeks because we couldn't decide which refrigerator to buy. As Jimmy Buffett says, "Indecision may or may not be my problem." In the end, I hated to, but I opted for the mast. Since I've already had chemo and am still taking herceptin, I will wait until mid-Sept. to have the surgery so I can get my school classes started before having to take time off. Thanks for all your help and understanding. Hope you are doing fine, Marlene. Luv, Linda Pearl (Pearl is just my nickname, by the way.)

    Wishing you well...
    Tough decisions to make.....I will add this though....with a mastectomy all breast tissue is NOT removed, because breast tissue according to my physicians extend all the way under your arm, almost reaching to your back....and even with a mastectomy bc can recur there ....I had a lumpectomy two years ago...mine has returned....NOT even in the breast but at my clavicle and other lymph nodes even though my lymph nodes were clean at the time of surgery.....

    You have to make the best decision based on your cancer with advice from your physicians...
    Wishing you the best...