glad I found you, new and scared

[sunny Lisa]

HI, This is my first time posting and my story. I am 43 yrs old with a 2.5 yr old daughter. I am not brave...I am afraid. I have what they think is DCIS insitu (?) per a core biopsey. I found out later it should have been an open biopsey (changed Dr). I am ER neg and PR neg, HR2+++. The lymphnode under my arm is enlarged to 1.5 cm amd my tumor is palpable at 3cm. The MRI showed extensive cancer moving towards my chest wall and under arm area. I am scheduled for genetic testing on 11/30 and a bi lateral mastectomy 12/1. My choice to have both sides done with reconstruction,silicone implants at the same time. I do not know why I made this choice since I have very little knowledge about what is best. I sopke with an oncologist about Herception and having a port put in during this surgery and he almost tore my head off asking why I thought I would need Herceptin if my nodes turn out to be Neg. He said I do not need treatment if the nodes are neg??? He also said I should ask my husband if I should have both breasts removed!(have consult with new Dr). Pls give me feedback, Thanks, Lisa.

[Mary Jo]

Lisa,

Most definitely you need a new doctor. Such arrogance and such an attitude. I get very angry when I hear how some Doctors treat their patients. Shame on him.

I wish you the best. It is scary, but as time goes on and you begin treatment things do settle down a bit.

God Bless you Lisa - His Peace I pray for you.

Mary Jo

[Sheila]

Lisa
GET A SECOND OPINION.....If you are Her2 +, even with neg nodes, you will still reap a benefit from Herceptin...I had neg nodes, and 5 years ago Herceptin was not available for node neg early stage breast cancer....well 1 1/2 years later I was eligible because I had a recurrence, and now am Stage IV.....
Not only is your oncologist arrogant, he isn't up on the latest breast cancer treatments.....get 2 or 3 or however many opinions...its your life.....and you need to get the best treatment early!

[Bev]

Hi, I'm not brave either. A regular chicken shxt. You've got to do some surgery though. I had a lumpy. You'll never know what choice is right until you're 15 years down the road. I hope you had a consult with a breast surgeon and a plastic surgeon. If you're small breasted, taking out 3cm will leave a divit or pleat. But I guess it could be spread out more, where it might be uglier to do a lumpy.

I don't know why a core biopsy would be containdicated. I had one doc say do an excisional biopsy, the rest said core.

Node neg, but had a 3cm at chest wall. ER and PR+. Finishing Herceptin tomorrow. There's a search link on the purple bar at top of page. Query on Herceptin, Stage II, Stage III.

Nothing wrong with 2nd and 3rd opinion. I would be very surprised if you didn't do Herceptin. I would guess you would do A/C, then taxol and Herceptin. Rads maybe for the nodes?

Hang in there. It gets better eventually. BB

[chrisy]

Hi Lisa,

Sorry you had to come here, but you came to the right place. You are braver than you think - to NOT be afraid at this point would just be unnatural!

I agree, you need to at the very least get a good second opinion, and in the end find a doctor who you feel will support you and work with you.

I'm not clear, and maybe you don't have enough information yet - but it sounds like SO FAR all that is indicated is DCIS, although it is extensive.

Your onc is correct, it is not "standard protocol" to have chemo or even herceptin if the DCIS is removed, it is only DCIS, and the nodes are negative. If this is the case, however, it is critical that they look very closely for microinvasion - the standard procedure is to just look at a sampling of the tissue. Push for a thorough evaluation.

Here are a couple of recent threads related to this.

http://www.her2support.org/vbulletin/showthread.php?t=25941&highlight=DCIS

http://www.her2support.org/vbulletin/showthread.php?t=25986&highlight=DCIS

These threads deal specifically with the question you asked, about when/if to get further treatment of DCIS. Not to scare you, but Her2+++ is a sneaky one, and we must stay vigilant. That said, remember that 99% of DCIS does not recur after it is surgically removed, so the odds are in your favor if there is no indication of invasion in the breast or spread to the nodes.

This is the hardest time of all - the waiting for surgery and to find out what you are dealing with. Then you will be able to move forward with the next decision. Try to take it one step at a time.


Take care
Chris

[RhondaH]

I am sorry you are going through this. I TOO would recommend a second opinion. I was HER2+ and no nodes and just finished my last Herceptin on 8/10/06. You WANT to be aggressive when it comes to this stuff. Take care and God bless.

Rhonda

[KellyA]

GET A NEW DOCTOR!! I agree. I was dx.'d in May of this year- 2.2cm, er/pr -, her2+, and 3 positive nodes. I chose to have a double mast. with implants. Glad I made the decision- and by the way- my hubby didn't mind - when your fighting for your life, its amazing what doesn't matter anymore. All I know is that I have 3 beautiful little boys that I want to be here for.

This is the hardest time. It gets easier. If you need someone to talk to, I 'm here.

Love, Kelly

[momdeeco]

My heart goes out to you as you make decision on fighting this disease. Don't be afraid to seek a 2nd or 3rd opinion. I went for a 3rd opinion and am so glad I did. (Wished I would have done it sooner!)
Praying for you and your family,

[saleboat]

Sorry you have to join us, but I'm glad that you found this site. I know how scared you are, being newly diagnosed was the worst stage of this journey for me, and once I learned more about bc and laid out a plan of attack, the more in control I felt.

There's nothing to be lost by getting another opinion. Take some time and decide if a double-masectomy is really what you want and need. It is a very big surgery and the survival stats are the same as a lumpectomy + radiation. Is your surgeon a breast specialist, or a general surgeon?

And you should talk to another Oncologist. I found it one of the most difficult relationships to forge-- here you are, the most vulnerable you've likely been in your whole life, and you have to work with this stranger to save yourself. It is hard, and having someone with whom you have a more natural rapport will make it easier. You shouldn't have to feel like you've had your head bit off.

I know it all feels like an emergency, but you won't put yourself back by taking an extra week and gaining confidence in your decisions.

Best of luck to you,
Jen

[rinaina]

Welcome and although I am glad you found us I am sorry you had to. As the others have said, time for a new dr. We go through enough during this that we don't need a dr who is unwilling to listen and speak kindly to you. I was node negative and I am receiving herceptin for my stage I er/pr negative her2+ cancer. I chose to have a lumpectomy as my tumor was not palpable and was only 1.4 cm. Hopefully I made the right decision for me but every case is different. You have some time to get other opinions. Good luck to you.

[Mary Anne in TX]

Hi Lisa!

I had my first mam. in one city and was scheduled for a biopsy when my mind just started to kick in and my heart said "ask more questions, get another opinion. I called a friend and got the name of another doctor in a larger town with a well known treatment center. They thought I was coming for a 2nd opinion, but I knew in my heart it would be "the place" for me! (The first town is 45 minutes away and the one I chose is a bit over 3 hours)

Before I had my surgery I talked to my onc., met and talked with my surgeon (recommended by my "very particular" onc., and saw a plastic surgeon (recommended by my surgeon). I had the implant scheduled along with the surgery, then called my onc. He said no. Not until I had radiation. Then I called the surgeon and plastic surgeon back and they both agreed. They all told me that the radiation might change the skin around the implant and it might have to be redone. I asked the surgeon to do both sides and he sat down and explained to me that because of my diagnosis, it wouldn't be necessary or even recommended (I'm ER-, PR-, Her2+++). Everything I do goes through my onc, which was our agreement when we had our 2nd appointment. He could tell I wanted everything checked out and needed help. He offered to coordinate the appointments and surgeries, always getting my input and approval. I know that I'm so lucky to have him (he won some big awards as a top 10 Texas Dr. last year) but I still asked tons of questions along the way. He's human and has a large practice. I ask about everything. As others said, it's your life and this is a sneaky disease. And a choice that is right for one of us might not be right for another. Our disease is different and we are different. I still don't know what kind of reconstruction I want to do. I have about 6 months to a year to decide, so I'm counting on the fact that I'll know. I have a couple of friends at the clinic who did theirs at the time of surgery and are so happy that they did!
Your relationship with your onc. is so important and long lasting, I would recommend you get more opinions and find the best one for you!
As everyone said, it gets easier and more understandable as you go. But I wouldn't have the peace I do, if it weren't for this marvelous group of "angels" on this web site. They are THE BEST!
Best wishes and take it one day, one step at a time,
Mary Anne

[RobinP]

Look, with something as serious as a cancer diagnosis, you deserve a second opinion, particularly when you have lingering questions about the care you are recieving.

Now, if you truely only have DCIS, a precancer that has not invaded out of the breast ducts, there is no need to get Herceptin. PS. Some DCIS is her2+ but if the cancer has not invaded there is no need to get Herceptin unless you do have positive node(s). Now, even if you don't have a positive node, if the cancer has any invasion, you should get Herceptin. I hope this does not sound confusing, but any indication of invasion, either in the node or in the breast as an invasive cancer, does deserv Herceptin if you are HER2+.

Personally, I think a double masectomy is a lot to bite off if you don't need the good breast removed. But, this is a personal choice. They say that new cancers are usually of the same type. So if your other good breast would become cancerous, I would assume it would be DCIS which has a near 100% cure rate.

If you have any questions, email me and I would be glad to help. Good luck and get many second opinions, as much as you need to make an informed choice comfortably.

PS Don't be scared, this group will guide you and hold your hand.

[Heart Sutra]

Thank you for being here.

We are brand new here too. So we can be scared together.

The truth is exactly what so many people here have repeated over and over.
Knowledge is power. Make your own opinion the one that really counts, and to do that you need to have as much information as you can. You WILL find a doctor you like and respect, they do exist, though sometimes it seems they're only mythical creatures.

It is scary. It's natural to be afraid. Don't let anyone tell you otherwise. Fear comes on the two of us like very sharp points to the day. The reality is that the total time we are in fear is actually only seconds a day, it's what we think about it the rest of the time that makes it overwhelming ....OR NOT.

We are so new to this that we feel unable to give advice, accept for this one: Ask the people here everything that comes to your mind. They have been wonderful to us, and I'm sure you will find the same. We do understand this much, the prognosis for HER2 is better today than it was only a short time ago. With that we have hope for better days.

We wish good things for you

---Kevin and Sue---

[Audrey]

Hi Lisa, welcome to this great site. I remember feeling so scared at the beginning of this cancer ordeal, too, but now I am aware of just how strong I really can be when put to the test. You will, too! Anyway, I was diagnosed with what they thought was DCIS and Paget's disease (involving the nipple) in July 2001, I was scheduled for a mastectomy with saline implant and after the pathology report came back, they found a large invasive tumor undetected by mammogram or ultrasound. (I was 36 at the time and had dense breast tissue). After the shock of this news, I had chemo, radiation and entered a clinical trial for a year of Herceptin. Thank God I received this wonderful drug and am NED 5 years later! I am a strong believer in Herceptin--it's very easy to tolerate and I really think it saved my life. I eventually had a mastectomy on the remaining breast (due to fibrocystic breasts and my anxiety over each mammogram and not feeling confident in their ability to find another cancer) and while I definitely feel less sexy, it was the right decision for me and my peace of mind. (It's your body and your decision, not your husband's! Can't believe your doctor would say something like that) Hope this is helpful, and I wish you the best of luck with your upcoming decisions and procedures.

[sunny Lisa]

HI, Thanks all of you so very much for your empathy,kindness and knowledge.
My breast surgeon suspects micro invasion because of the extensive nature and size of the tumor. Should I ask for a port at the time of the surgery if invasion if found? I will push for a detailed look at tissue for invasion.Has anyone had single mastectomy only to be left feeling uncomfortably unbalanced? Did the plastic Dr. have difficulty matching the breast with onesided reconstruction? Is Herception with no invasion available in trials only? Do you think I will need radiation? Why would they reconstruct now if I might need rad. later? I am so confused but did not want to delay surgery since I was diag. 9/22. The plastics Dr was very hard to arrange because my ins. co. pays so little towards the reconstruction and the plastics guys are used to being paid all the money for cosmetic procedures. This really delayed the surgery. The DCIS has spreds into multiple quads making mastectomy the option. Any opinions or thoughts are appreciated. Thanks.

[sunny Lisa]

Heart Sutra, I am sorry to hear we are both in this situation but lets try to figure this illness out so we can beat it.
Lisa

[tousled1]

Lisa,

Welcome to the board but sorry you have to be here. You will find the women here have a wealth of knowledge and experience. I agree with everyone's replies. Your oncologist will become the most important doctor in your future. Think of it as buying a pair of shoes -- if the shoe doesn't fit you don't buy it. It's the same with doctors. You must feel comfortable and have complete confidence in your oncologist. A second opinion never hurts. As for getting a port in -- if you are going to have chemo it is much easier when you have a port.

[chrisy]

dear Lisa,

For some of your other questions re the port and reconstruction,

I didn't have a port so I don't know! It's also not certain that they will really know enough during the surgery - for instance, they will likely not be able to find microinvasion - to "know" if you will require chemo or other infused goodies. The port placement is an outpatient procedure and should be easy to do later if necessary. Ladies who have had this may have different opinions.

I had single mastectomy and with silicon implant (after expander). I had reduction on the other side. With clothes on nobody can tell - my ps did a great job and I was delighted with my nice perky breasts.

I think you need to push on your insurance co, in many states they are required to pay for reconstruction for BC, including on on the other side for symmetry. But, as long as you can get the expander placed, you can fight that battle later. Right now, I would focus on eliminating the cancer first!

Don't forget to BREATHE. This is a very scary time, but you are stronger than you think.

Take care
Chris

[Heart Sutra]

I may be wrong, probably am...

Doesn't law require reconstruction for breast surgery? Is this only in New York?

I'm sorry you've had trouble with the plastic surgeon... might be an idea to try another one?

[sunny Lisa]

Hi, my ins co is required to pay for reconstruction...the problem is they only pay several hundred $ and feel that is a reasonable and customery amount. The ps is used to getting 6000.00 for a routine breast augmentation. The problem is getting on the ps schudule when the pay off for him is so low. This has been my experience in my area.
Lisa

[VirginiaGirl]

Dear Lisa,
I agree that you need to get a second or third opinion. That arrogant doc will not be helpful to you. The first onc I saw told me my cancer treatment was "a no brainer" an attitude which my husband & I didn't appreciate. I want a doctor with imagination and an open mind. I found him across the parking lot from the first! Unfortunately, doctors are so very busy that you REALLY need to be your own advocate, ask questions, remind them of what they told you last time, etc. Is there anyone in your life that can, at least temporarily, help you advocate? It's a heavy burden to carry by yourself. We all make the best decisions we can for ourselves and move on. It will get better! Keep us posted!
Peace

[chrislmelb]

i remember when i was diagnosed i just had so many questions i just wanted to ask everyone. you have come to the right place for help. Re bilat mast, i can't say either way. i had a RHS mast with saline expander immediately. after chemo i had it changed over to a silicone implant. initially my boobs looked pretty good together but now i have put on weight!!! so now i am lopsided and it is annoying but i have decided to cope with it. I was quite fixated for a while about having the "other boob chopped off" but now i have settled down and probobly want to avoid anymore unnecessary surgery (i had 7 GAs in 2 years, so enough!!) Also i am more concerned about spread to other parts rather than the other breast.
i have a port and had it inserted when i knew i was up for two years of Herceptin, as my viens are hopeless. If they can insert port at start, i'd go for it.
anyway there is so much to take in.
All the best
Christine

[Bev]

Hi again Lisa,

Because you said the node was enlarged, I assumed you had node involvement but that may not be the case. For me they sent the tumor tissue to the pathologist during the surgery. Sentinel node came back neg so no further surgery was needed. If it had been positive they would have gone back and taken more lymph nodes. If your nodes are positive they would do rads on them. Your doc won't have the full picture until the actual surgery.

I wouldn't worry about the port yet. It's easy and you have time to make these decisions later down the road. I know your just trying to get all your ducks in a row. Set up your appointments with 2 or 3 oncs now for later in Dec and go from there. It should be after Dec 8th as I don't think complete path will be back sooner.

Try not to worry too much. I've never heard of anyone that hasn't sailed thru surgery It hurts and you're tired. One day at a time. BB

[Ruth]

Lisa,

Federal law dictates that reconstruction is paid for by ins. companies...what you are responsible for is co-pays and deductibles. I can't believe that your insurance carrier is only willing to pay out so little. Is this from the PC or directly from your carrier? I had my right breast removed with radical mastc. and augmentation on remaining left breast to create balance and symmetry. This was all covered by insurance and my PC charged his normal fee for this procedure. I am a little nervous about the PC you have picked out. If you are close to a major city in Florida, please go to a PC that specializes in reconstruction or at the least has good experience with it! I went to three before I decided on one and couldn't be happier.
I also had a port and had it inserted after I was done with 4 doses of dose dense AC. I wish so badly that I had it before I even started. It made the remaining taxol and year worth of Herceptin such a breeze with it in. I couldn't wait to get rid of it after Herceptin was over but I couldn't imagine getting stuck weekly without it. My veins started rolling after AC and three years later, they still act up!
Please email me directly if you have any concerns about the reconstruction. I'd be happy to help.
Peace & love ~ Ruth

[lkc Gumby]

H Lisa,

So Sorry about your news, but information is power and you will get stronger and stronger with lots of support and the accurate information.
This is a great place for us HER Pos girls.

I was dxed with stage IIIC 12 out of 14 pos nodes June 05. I had a lumpectomy first, then because of no clean surgical margins, and the nodes, i went back in for a mastectomy. I then had dode dense AC, then Taxotere with herceptin,
after finishing herceptin, I had my rads done an continued herceptin.
I had my left breast removed and bilateral saline implant reconstruction June 06.

I would strongly advise you to seek out a Dr whom you are comfortable with.
My surgeon was abit abrupt, (butveryvery good) and my onc is wondrful.
I received all of my tx in Florida ( except a few mos of Herceptin ) and my insurance paid for everything once I met my out of pocket expense.
Your insurance should cover reconstruction as it is not an augmentatio or cosmetic. Speak to a case manager at your insurance compoany who can assist you.

This is the hardest time now, be kind to yourself, you will get through this, and you don't have to know all the anwers to everything right now.

Unfortunately,( Or fortunately ) you've become one of us, which means you are going to learn alot about BC.You will be OK.

God Bless,
Linda