New here and so many questions

Options
debbie53
debbie53 Member Posts: 27
edited June 2014 in HER2+ (Positive) Breast Cancer

Hello. I have been newly diagnosed and am her2 positive.  With this information I am told that even though I am Stage 1 I will need chemo and herceptin.  I was wondering since I had a lumpectomy, is this the right way to go or is a masectomy better as it pertains to reoccurence?  I just want all of this to be over, and I am an emotional mess right now.  Any information or guidance from those that have gone through this would be so helpful.  I just happenned to fall on to this site, and am so glad I did.

Thank you all so much for any help or hope that you can give me.

Debbie 

· Share on FacebookShare on Twitter

Comments

  • debbie53
    debbie53 Member Posts: 27
    edited March 2009

    I also have one more question.  Did you all need to get a port for your meds?  I am so nervous about that idea.  Has anyone not gotten a port?  If so, how is/did it work for you?

    Thanks again

    Debbie 

    · Share on FacebookShare on Twitter
  • ejlj
    ejlj Member Posts: 211
    edited March 2009

    Sorry to hear about your diagnosis, but glad you found this place.  It has helped me alot!  Lumpectomy vs.mastectomy - I think you need to listen to your doctors and then just go with your gut.  I was committed to mastectomy from the very beginning.  I can't say what's better for YOU.  I had a port put in but also had a prety aggresive chemo plan, but I know people who do just fine with out one.  Sorry this doesn't give you any answers to your questions, but I don't think there is neccesarily a right or wrong answer here, just what you feel the most comfortable with.  Good luck in your jouney!  tina

    · Share on FacebookShare on Twitter
  • lexislove
    lexislove Member Posts: 2,645
    edited March 2009

    Hi debbie...

    Welcome I am HER2 + as well, and finished my Herceptin in Novemeber 2008. The port is a magnificant idea. Most woman do get it. Thats is because after chemo you will still be going for your Herceptin every 3 weeks for about a year. The port will help "save" your veins from collapsing, and you won't need to worry about getting priked all the time. To put in the port is fine..they use a local anesthetic, I felt nothing. If you are nervous before the procedure just ask your doc to perscribe you some anti anxiety med, Ativan is what is commonly used.

    The whole lumpectomy vs mastectomy is a very personal choice. I did mastectomy my docs agreed but my tumor was 8cm so I had no choice. When you are talking in regards to over all "survival" Lumpectomy and mastectomy are the same. IF you choose lumpectomy you will have radiation . If mastectomy,depending on the tumor location, you may get away with it.

    There is a difference in "local recurrence" though. Local recurrence is the breast....a woman who chooses lumpectomy has maybe approx...30% chance of it coming back in the breast...where as a woman who chooses a mastectomy has about 1-2% chance of it returning to the breast.

    · Share on FacebookShare on Twitter
  • orange1
    orange1 Member Posts: 930
    edited March 2009

    Hi Debbie,

    The diagnosis is terrifying.  I'm sorry you have to go through this.

    Re: Port -  I think I am one of the few that did not have a port.  If I had it to do again, I probably would get a port. 

    The reason is that the chemo ruined my veins on my unaffected side, and we're not supposed to have IVs in our operated side.  Now whenever I get an IV its a little of an ordeal.  Not the pain; my nurses are gentle and the sticks don't really hurt that much.  Its an ordeal because they can never find a vein, so it takes forever.  First they warm my arm up to dilate the veins as much as possible.  Then first nurse tries, an invariably doesn't succeed at getting the catheter in.  This is not her fault because I really don't have much vein left.  Then they have to find the expert nurse - this takes a while because she has other patients to attend to - and sometimes it takes her a couple tries.  Basically, what should be a short infusion (the herceptins without chemo), eats up half the day and is frustrating for the nurses and me. 

    You will be having Herceptin infusions every three weeks for an entire year.  Also, I was surprised at how many other infusions I've ended up having.  I had a mastectomy after chemo (IV for anesthesia and fluids, a little touch up surgery, a colonoscopy and now I get zometa twice a year. (Zometa has been shown to reduce the chance for recurrence in premenopausal breast cancer patients.) 

    re: mastectomy vs lumpectomy.  This is such a personal decision, but here is my experience:

    At first I had a lumpectomy based on the recommendation of my surgeon.  Then I ended up having a mastectomy 8 months later because no radiation oncologist would give me rads due to a contraindication because I have an underlying condition that makes rads contraindicated.  It turns out I am happier with the mastectomy.  It actually looks better than the lumpectomy did (I had a skin sparing mastectomy - so I don't have a lot of scars).  Also its less painful then my lumpectomy was after 8 months of healing (if feeling in your operated breast is important to you, you probably don't want to go this route).  Also, I like the fact that now there is one less place for this cancer to recur.  The diagnosis shook me up enough, that even though survival is not affected, there no way I want to deal with even a local recurrance. 

    If you go the mastectomy route, be sure to shop around for the best plastic surgeon around.  There is a huge difference in outcome based on the surgeons skill. 

    Good luck with your decisions and treatments.  Jackie

    · Share on FacebookShare on Twitter
  • bluedasher
    bluedasher Member Posts: 1,203
    edited March 2009

    What I've read and been told regarding local recurrence doesn't agree with what Lexislove wrote. For lumpectomy with radiation and mastectomy, the local recurrence is the same. I have read that older statistics saying that local recurrence was higher with lumpectomy included women who got lumpectomies without radiation. Based on that and because I had a small lump in a large breast, I went with a lumpectomy.

    Breast size factors into the decision. I'm large breasted so if I had the mastectomy, I would probably have to have the non-cancer side reduced to avoid being lopsided. I didn't want the down time and recovery for the bigger surgery when a lumpectomy would do. Sometimes with a small breast or a large tumor, a lumpectomy will not have good cosmetic results. Since you are stage I, that probably doesn't apply to you unless you have a lot of DCIS. 

    Retaining feeling in the breast was important to me so that was also a factor in my decision.

    I had surgery last September, I've finished TCH chemo and I'm 1 1/2 weeks into 6 weeks of radiation now. I'll continue to get Herceptin once every 3 weeks until October.

    I got a port. My veins aren't great and I didn't want chemo making them any worse. Some of the chemo drugs can be hard on veins. With a port, the drugs go straight into a big vein (my juglar) where they get diluted quickly so they don't cause problems to the vein. It isn't perfect. Sometimes I'm aware of the port or the catheter from it to the vein under my skin. For me, the needle stick into the port hurts about the same as one into a vein. But they generally get the port the first time so I don't get multiple sticks. 

    · Share on FacebookShare on Twitter
  • Annaanne
    Annaanne Member Posts: 190
    edited March 2009
    Hi Debbie:
    I wanted to agree with Bluedasher.  I went to one of the top breast surgeons in the country (he pioneered the sentinal node biopsy) and aggressiveness of pathology was NOT a factor in whether or not a lumpectomy was appropriate or safe.  Factors were position of tumor, whether it's multi focal and cosmetic outcome.  As long as the surgeon can excise all the malignant tissue with clean margins and you can (and must) have radiation, a lumpectomy is just as good at preventing recurrance as a mast.  Her2 pos or neg.  Cosmetic outcome is a big factor -- if a lump gives a good cosmetic outcome, it's a much easier route.  If you like the idea of reconstruction or being flat, want (or need) to avoid radiation, or will be uneasy with breast conservation, then maybe a mast is for you.
     I traveled to Los Angeles for my surgery and am really glad I did.  I recommend finding the most experienced surgeon you can.  Consult a few.  If you can, find one who specializes in breast surgery (as opposed to a general surgeon.)  Try big university or cancer centers.  If you're in a small town, travel to a bigger city, at least for a consult. 
    Her2 is an aggressive cancer, and that's why you'll need chemo and herceptin.  But as far as I know, the type of surgery is not a factor in recurrance risk. 
    I can recommend some great surgeons in No and So California, if you are anywhere near here.  Let me know if you want more info.
    By the way, with stage 1 disease and herceptin, you should do great.  I had stage 3a her+. hormone neg and I'm four years out.  Totally fine.  And I had a lumpectomy.
    Annaanne 
    PS.  Most oncologists insist on ports.  I had one for my chemo and full year of herceptin.  I didn't like it, but it worked great and certainly saved my veins.  
    (It looks like the top of this post is in italics -- sorry -- I don't know why) 
    · Share on FacebookShare on Twitter
  • debbie53
    debbie53 Member Posts: 27
    edited March 2009

    Thank you all for your input.  This all seems like such a nightmare to me.  One day, my biggest complaint is a headache---I don't drink, smoke---lead a pretty simple life--and then wammy--

    I seem to be so scared about everything that is coming---one minute I think I may be ok the next I fell so defeated.  

    Did anyone here get a port in their arm?  Just wondering if that is possible.  Sounds like with needing herceptin for a year, there really is no other option then to get a port.

    I have read so many things in the last few weeks, one says triple positive bad, then one says triple positive not bad cause of treatments-----so confused!

    I am working on getting my attitude in check and all of you are so helpful.  I will probably start treatment inthe next few weeks as my medical onc initial visit is on Wednesday.

    Thank all of you for your help and support.  This site is invaluable to me.

    · Share on FacebookShare on Twitter
  • shelloz1
    shelloz1 Member Posts: 405
    edited March 2009

    Hi Debbie,

    Are you living in Israel?  I sent you a PM (private note) but I didn't hear back from you.  I have a similar dx to you, I had a lumpectomy followed by 4 A/C, 6 Taxol, Rads and Herceptin for one year.  I did have a port, from the beginning I had problems with my veins, I knew that having a year and a half of IV's would be a problem.  The port is a great idea, it is a little uncomfortable at the start, but well worth it.

     If I can help you in any way, please let me know.  PM me, I will give you my private e-mail and tel # if you are interested in talking.

    Right now you are at the worst stage, it will get better in time, be strong, and I'm sending you my hugs and prayers.

    Shelley

    · Share on FacebookShare on Twitter
  • Annaanne
    Annaanne Member Posts: 190
    edited March 2009

    Debbie:

    It's normal to be scared and confused at this point.  It will get better as you get used to big curve your life has just taken.  Treatment is not easy (sometimes it's hard, sometimes just annoying and inconvenient), but your prognosis should be excellent.  Don't obsess about your stats -- you have really early stage, curable disease.   

    Take care.  We've all been there...

    Annaanne 

    · Share on FacebookShare on Twitter
  • debbie53
    debbie53 Member Posts: 27
    edited April 2009

    Shelley

    Thank you so much for your reply.  I am sorry but I do not know how to PM.  I live in Maryland and would love to PM you.  Please let me know how.  I guess I am behind the curve on the tech stuff.

    Thank you so much for the hugs and prayers.  I see the medical oncologist first visit today and am so scared.  My stomach is so upset and have had diarrhea for 3 days!  I hope after today I will understand everything a little better.

    Debboe 

    · Share on FacebookShare on Twitter
  • debbie53
    debbie53 Member Posts: 27
    edited April 2009

    Everyone

    Thankyou all for caring.  It is such a big help to me.  Since I have told my friends and family, they seem to be more distant.  I guess it is hard for them to know what to say.  My husband has been there, holds me, and comes to look for me when he wakes up and sees that I am not sleeping.  You all give me hope that I can make it through this.  I hope I can have half the courage that you guys do.

    Debbie 

    · Share on FacebookShare on Twitter
  • Jaimieh
    Jaimieh Member Posts: 2,373
    edited April 2009

    Debbie I live in Maryland also and I have an excellent Plastic surgeon and Breast Surgeon if you would like any recommendations let me know.  I have a port and after being sad about getting it I am thrilled that I have it because I put some emmla cream on and I barely feel anything when they access it. 

    · Share on FacebookShare on Twitter
  • my2boys
    my2boys Member Posts: 339
    edited April 2009

    Hi Debbie,

    Please take a deep breath and tell yourself that this too shall pass.

    With that being said, I will tell you that I am HER2+++.  I opted to get a bilateral mastectomy for the simple reason that my cancer could not be detected on any tests.  My breasts were dense and hard to screen.  Digital mammograms, sonograms and even an MRI showed nothing.  All reports stated "benign" findings.  They couldn't do a needle biopsy because they couldn't see the lump!  I had to have the lump removed, by my doctor feeling it in order to have it biopsied.  I knew that if I chose to keep my breasts that there would be no way to screen me other than self exams.  It turns out that after my bilateral mastectomy I learned that there was a larger tumor sitting right next to the one I felt and none of my tests picked it up.  There was also an LCIS in my "healthy" breast.  If your breasts are dense and hard to read, I would think hard about the possibility of removing them. 

    I am almost complete with my reconstruction and my plastic surgeon is optimistic that I will look great. 

    I opted to get a port because I had many nodes removed from one of my arms and I didn't want to have to put the other arm out of commission too.  I use the port for blood draws and also chemo and herceptin.  If I had it to do all over again I would most definitely get the port.  Mine is in my upper right chest, just below my collarbone.  Most of the time I don't even know it is there.  My surgeon had me go under general anesthesia for the port, but many surgeons only use a local.

    Don't forget that we are all here for you, okay?

    Remember, the worst part is the diagnosis.....once you have a plan in place it will get easier.  I have two young boys to take care of and I never thought I would get through this, but I have done pretty well so far and you will too!

    Anne

    · Share on FacebookShare on Twitter
  • angie27
    angie27 Member Posts: 863
    edited April 2009

    Hi, Debbie

    I did all of treatments with my veins, I refuse to get a port, all well so far, I have 3 more treatments of herceptin.

    · Share on FacebookShare on Twitter
  • juliejfsrj
    juliejfsrj Member Posts: 57
    edited April 2009

    I refused a port also, and just finished my year of herceptin in late January.  I did just fine!

    · Share on FacebookShare on Twitter
  • swimangel72
    swimangel72 Member Posts: 1,989
    edited April 2009

    Hi Debbie - it's perfectly normal to be scared and confused - I went through the first couple of months in a total daze after my dx! My oncologist said I HAD to get a port because of the kind of chemo I was getting (Navelbine) which could burn your veins. After only two infusions, my port became infected and had to be removed. From then on, my infusions were through my left arm (my right arm already had a slight case of lymphedema). In the beginning, my arm would be heavy and sore especially at night - but then the nurses started using a full bag of saline while giving me the Navelbine and that solved the problem. After 4 months on that drug, I continued with Herceptin alone for a full year (I'll be done in 2 weeks, yay!). Herceptin itself doesn't damage your veins. So my advice is to talk to your oncologist about the specific drugs you'll be getting before deciding on getting a port.

    As for your question regarding lumpectomy with rads vs. mastectomy - my breast surgeon gave me wrong information. He told me that mastectomy has LESS chance for recurrence - so I opted for a mastectomy. Later I read the truth right here at bc.org and I was upset at first - until I remembered that part of my original decision was based on the fact that I was very fearful of radiation. Here's the link to the info you need to read:

    http://www.breastcancer.org/treatment/surgery/new_research/20080731.jsp

    Hang in there now Debbie - it's a long roller-coaster ride - but we're all here with you!

    · Share on FacebookShare on Twitter
  • plakatakr
    plakatakr Member Posts: 188
    edited April 2009

    Debbie- we have the same DX. I had a lumpectomy, mammo-site radiation and Chemo. 4xTCH every 3 . I'm continuing with H for a yr. No port, no problem yet. 10 more H to go.

    · Share on FacebookShare on Twitter
  • orange1
    orange1 Member Posts: 930
    edited April 2009

    Debbie -

    Just for your information, the chemo I had that ended up ruining my veins was 6 cycles of TCH.

    I would ask an onc nurse (versus your onc) if they see more ruined veins with some drugs vs others, and also about length of treatment.  I'm guessing the nurses would be able to give you more accurate information since they deal with starting IVs every day and the oncs don't have hands on experience.

    Jackie

    · Share on FacebookShare on Twitter
  • GointoCarolina
    GointoCarolina Member Posts: 753
    edited April 2009

    You have sure come to the right place for info.I chose a mastectomy because I did not want radiation. I had a port,as advised by my onc nurse,she knew I hated needles.funny thing, they do not bother me at all now,but had the port taken out two weeks ago, as I lost so much weight,the catheter up in my neck was very irritating,to the point where I could not sleep.I had the port all through chemo and I am glad I had it. I have ten herceptin to go,I have good veins, but not sure they would have held up to the chemo(TCH)The port was put in with a kind of twilight anesthesia, I chattered all through it,but didn't feel much if anything.I was like you, never sick a day in my life, had not seen a doctor in several years,ate right,exercised, etc.One thing I will advise is during your chemo to make every effort to eat healthy.And if you have any stomach pain, see a doctor, I had chemo induced gastritis, was in the hospital ten days and lost weight way too fast! I do want to say my onc nurse was the best,she helped me so much, I haven't seen her in three weeks and I am looking forward to my herceptin appointment on Thursday.I NEVER thought I would look forward to going to the clinic!!! We are all here for you. Jackie

    · Share on FacebookShare on Twitter
  • giglgrl
    giglgrl Member Posts: 81
    edited April 2009

    I am also recently diagnosed HER2+ and I have the port. It is in my upper right side just below the collarbone......It was a little weird at first, but I am used to it now. I cannot imagine not having the port......just the amount of time getting blood draws and all the testing before treatment was doing a number on my arms.....I find the port to be a huge relief.....I had my first treatment and all I had to deal with was one little poke in the port. So glad I did it. I am Stage IIb at this point. I will be having a double mx in July. I have large dense breasts and do not want to deal with anything coming back or missing something......it is all so scary, but we will get through it.....

    · Share on FacebookShare on Twitter
  • GratefulGal
    GratefulGal Member Posts: 20
    edited May 2009

    Debbie -  

    I too, live in Maryland. I have two terrific surgeons and after much discussion, I opted for bi-lateral mast. with reconstruction. As so many other women have mentioned on this site, this is such a personal decision. I wound up talking with someone who had my diagnosis and was comfortable once I made my decision. It did take me a bit to get comfortable with it, but it was the right one for me.

    I found out 2 1/2 months after surgery that I needed to have chemo due to three intramammary nodes testing HER2+. After the oncology nurses looked at my veins, we decided that a port was the best option. It was the right choice for me. My collarbone wound up sitting on the catheter, which was fine, but the surgeon did indicate to me that if it became problematic, he could place the port in the arm. So, it was an option.

    BTW, I just found out that a PM stands for private message and you can access any messages sent to you from your preferences or login name. If you wish to send someone else a PM, you can click on their screename and it gives you the option.

    Trixie

    · Share on FacebookShare on Twitter
  • Bold
    Bold Member Posts: 692
    edited May 2009

    Debbie: I was told by my surgeon, as well as the research that I did. That there is no difference in the our come of survival and recurrence. (with radiation)I had a 3.5 cm tumor and opted for lumpectomy. She took out a tennis ball size from my breast and you can not tell at all. She did a wonderful job. I also did not get a port. I am currently finished with chemo and only have until Dec for herceptin. (every three weeks, the usual) I have juicy veins from years of athletics so I have had no problem. They get me on the first stick and have many choices of veins on my good side.

    I guess that it is very personal. You have a good prognosis and should not be to fearful of recurrence. I know anything can happen but with Chemo and Rads you have less a chance than the original 1 out of 8. Weird huh? Good luck and remember to breath.

    · Share on FacebookShare on Twitter

Categories