Just got HER2 + results (FISH)

rebecca0623 · 07-18-2008, 10:56 AM

I found this group from searching for information on HER2 +. I think this biopsy result finally made me face that I had aggressive cancer. I have been OK up until now, but this scares me. It is helpful reading some of your stories and threads. My surgery is July 30 and I am terrified of the node results, but I see so many of you doing well with node positives this has helped. I have opted for lumpectomy and reconstruction (right) but I now wonder if, because of aggressive tumor (grade 3) and HER + I should consider bi-lateral mastectomy. Anyone have thoughts or faced this dilemna? Thanks for any help and thanks for being here.

Vi Schorpp · 07-18-2008, 11:14 AM

Welcome. You will find so much valuable information here. Unfortunately, the question of whether to have a lumpectomy or mastectomy is a pretty universal one for most of us here. If you use the pull-down search menu above (to the right), you can type in those words and see what has been written on this subject. However, it is a very personal decision, and one that I faced as well. There is no right answer, there is only what is right for YOU. My sister-in-law opted for a lumpectomy but wished she would have had the mastectomy because she is small-breasted and felt the lumpectomy was disfiguring. So, size of breast may come into your decision.

I remember wishing someone would tell me what exactly to do regarding lump/mastect., but it really is a personal decision. Research has shown that a lumpectomy is just as favorable as a mastectomy.

You will do what is right. Have faith, and we're all her for you.

swimangel72 · 07-18-2008, 11:22 AM

Hi Rebecca - I'm so sorry you have to deal with this, but you have come to the right place for information. As to your question concerning a bil-lateral mastectomy - are you BRCA positive? This test may help you with your decision. I went with a unilaterial mastectomy because I was BRCA negative - and an MRI on my "good" breast showed no signs of cancer, so I was comfortable leaving it alone. So much depends on your tumor pathology and your level of worry.

Even though my tumor was "only" a Stage 1, Grade 1, I chose a mastectomy because my breasts aren't very large, so I felt a lumpectomy and radiation might be disfiguring in the long run. Afterwards I found out that the tumor was Her2+ so I felt even better that I chose the mx. My surgeons agreed I was a good candidate for a skin-sparing mastectomy with an immediate Diep..........it ended up as a muscle-sparing free-Tram (for some reason, the PS decided he needed to remove a small piece of my abdominal muscle, which later caused abdominal wound complications.) My new "foob" needs some tweaking to make it match the other side, but I have to wait until next year when I finish the Herceptin.

I hope you're feeling OK - good luck in your research process. It isn't easy, but together we'll get through it!

Jackie07 · 07-18-2008, 11:34 AM

Hi,

Mine was also a very, very fast growing grade 3 when I first found the lump in summer, 2003. After researching and found out there's a 50% recurrent rate of lumpectomy + radiation, I asked my doctor to go ahead take all my breasts. But she would not recommend it because "radiation + lumpectomy has the same outcome (I guess statistically) as mastectomy."

In 2007, I finally got double mastectomy after a scary discovery of the recurrence - it's been there growing since after the lumpectomy but the radiologist kept calling it 'scar tissue'. (I guess both him and I trusted the surgeon; but we both were wrong.)

It's the ugly fact of this disease. And nobody can guarantee anything. The good news is, it doesn't matter anymore if it is HER2 or Grade 3, the doctors now have got more and better weapons to help us to fight it.
Good luck in your journey and know that we are all here for each other.

dhealey · 07-18-2008, 11:41 AM

Hi Rebecca, I too was diagnosised her2 positive, grade 3 tumor. I opted to have a mastectomy and then when I finished chemo I had the other breast removed as well. Breast cancer runs rampant in my family. I have never regreted my decision. I did not do reconstruction (I am 53 and that was not important to my husband and me.) I feel just as sexy without the boobs. (It is all in the state of mind) Either way it is a personal decision as everyone feels diffrently about their bodies. Best of luck.

AlaskaAngel · 07-18-2008, 11:42 AM

Hi Rebecca0623,

I don't know the latest data on this but you might want to consider the question at least in part in relation to the exact location of the cancer, and see/ask what currently is known about higher recurrence rates when the cancer is located, for example, closer to the mammary nodes; or alternatively, whether cancers located in one quadrant have a higher recurrencer rate than cancers located in a different quadrant. As well, the same question in regard to rate for those close to the nipple, or close to the chest wall.

AlaskaAngel

Gerri · 07-18-2008, 01:06 PM

Hi Rebecca and welcome to our site. You will find many helpful people here to answer concerns you may have along the way. Your question regarding lumpectomy vs masectomy is indeed a deeply personal one. I think you will find (for the most part anyway) that each of us is happy with what we chose to do. At the time of my decision making I asked my surgeon for his recommendation. Considering the size and location of my tumor, he told me he was comfortable with me having either procedure, and that it was a decision only I could make. I opted for a lumpectomy. My tumor was also grade 3, 2.2 cm with no lymph node involvement. I am not small breasted and there is very little difference in how my breasts look - my scar is barely visible. I am happy with the choice I made, knowing that there are no guarantees, but it was the right one for me.

Don't let the stats on HER2+ scare you, most of what is out there is a few years old. More recently we are considered to be fortunate in that newer and better drugs are being developed every day targeting our partcular cancer. Herceptin, and now Tykerb are indeed miracle drugs!

Good luck with your decision making. Please keep us updated.

Take good care,

rebecca0623 · 07-18-2008, 01:29 PM

Wow - what terrific responses and great information. I am glad I decided to post - I have taken a look at other support groups on line and they didn't seem to be for me. You are all very supportive and I am feeling somewhat better. I am glad you guys are here!

Terri B · 07-18-2008, 01:36 PM

Hi Rebecca,

As most of the great advise here says, it's ultimately going to be your choice. But since you are asking...

I opted for a double mastectomy with immediate reconstruction rather than a lumpectomy for several reasons:

1) after the initial diagnosis, my MRI showed another "spot" in the right breast and another in the left
2) the path report came back HER2+++ and grade 3 (9/9 richardson)
3) I had such BIG boobs that I had considered reduction anyway.
4) I never considered only one side. What good is one boob without the other?
5) I didn't want to be bothered with more needle biopsies or mammograms or ultrasounds in the future in the remaining breast tissue. Period.

I am VERY happy with my decision. I haven't worn a bra since April!!

Hang in there. It's all very very scary. But we'll be here for you!

CLTann · 07-18-2008, 07:09 PM

Hi Rebecca,

As you can see, I am in favor of mastectomy. Although we have been told by oncs, as well as by Susan Love, that the two paths gave the same statistical probability of recurrence, a little voice whispers this may not be true.

Leaving a part of breast intact with lumpectomy, you risk the spread of cancer from the known potential of micro cancer cells existing around the tumor. That is precisely the reason for radiation and chemo. Radiation can kill most of the micro cancer cells but radiation cannot reach all the remainder breast. This is the reason that chemo must follow the operation.

Additionally, we all know that radiation is a potential cause for cancer. All of us have a life-time limit of the cumulative radiation. This critical point varies with the people. The radiation required after lumpectomy is a considerable high dosage.

In the final analysis, it is indeed a personal choice. Consider all advices, consult with your family and make an objective judgement. Good luck.

Janelle · 07-19-2008, 12:33 AM

Rebecca,
How old are you? Are you premenopausal? I chose to have double masts even though I was node negative because I was under 40 when diagnosed and I had many years ahead of me (God willing) to recur. If I were older I may have made a different decision. I was told I had about a 25% chance of getting cancer in my healthy breast due to my original diagnosis at a relatively young age.

Good luck...Ask your docs, ask us, then go with your gut.

Janelle

07-19-2008, 09:17 AM

Rebecca:
I had a lumpectomy three years ago and have been fine and grateful. I did not have a small tumor, had one pos node, aggressive cells and yet feel very safe.
I recommend finding the best, most experienced and enlightened surgeons (specializing in breast cancer surgery) you can locate and consulting two or three of them. You might even want to travel to a bigger city for your surgery.
If you know you want a mast, then the decision is easy. If you're not sure, I think the surgeon is the one who knows if a lumpectomy will give you similiar odds for staying recurrence free (and the odds should be within 5% of the odds for mast for local recurrence, the same odds for life expectancy). And the surgeon may not really know until the surgery and the pathology, so you are facing more of an unknown with a lumpectomy. For me, it has been totally worth it. I don't worry, the cosmetic result is great, I have more follow up, but I don't mind.
The others are right that there are certain criteria that do make a mast necessary or a lump not cosmetically ok -- BRCA pos, unclean margins, location of tumor, extensive DCIS, etc.
If you want help finding surgeons, you might post where you live and see if women on this site have info.
Good luck
Linda
PS. I was told that pathology (having an aggressive cancer) need not effect your surgery choice.

kcherub · 07-19-2008, 09:56 PM

Rebecca,

Hi, hon. I am so glad you posted, but sorry you needed us! This group is one of the best I have found. Well, the best. You will always get an answer from someone, even if they can't answer, they will pat you on the back! No arguing, griping, or backstabbing on this board. We can disagree, but there is still so much care here.

I was 34 when diagnosed, grade 2, 1.4 cm. (surgical patholgy). My signature has my other stats.

I am also interested in knowing your age and your ER/PR status.

Hang in there--Herceptin rocks!!!

Take care,

rebecca0623 · 07-20-2008, 03:09 PM

For all those who responded to me let me say it has been a blessing to hear from those who are going through this right along with me. I have had sleepless nights and this discussion is helping my perspective. For those who asked, I am 44 years old and ER and PR positive. lump is 1cm at 10:00 outer ring right breast. I am treating with cancer center in Nashville at Nashville Breast Center. I am having fibroids removed (low hemoglobin and have to now be off of hormones that were controlling them) and will do that at same time as lumpectomy and reconstruction on July 30th.

I now know that I will be having a radioactive injection to find sentinel nodes prior to surgery - I have heard this is somewhat painful and they have given me a cream to numb the area - 4% lidocaine cream - to put on before coming to the hospital. Anyone have experience as to whether this will help? Thanks for all information and suggestions - they are very helpful!

DanaRT · 07-20-2008, 04:30 PM

Rebecca,
This rollar coaster ride is not fun but this site is so helpful. We didn't find out my cancer tumor was Her2+++ and er/pr negative until after I had the lumpectomy. My oncologist surgeon and medical oncologist agree the survival rate is the same but I wonder....
I have my next mammo is in October, if there are areas in question I will consider a bilateral.
Nice that you're offered the lidocaine prior the sentinal node injections. Feels like bee stings but it's short lived and doable.

Thinking of you,
Dana

kcherub · 07-20-2008, 06:17 PM

Rebecca,

I think that most surgeons today will offer women the option of lumpectomy or mastectomy, unless the are other factors that would make mastectomy absolutely necessary. However, my experience has been that most surgeons will also tell you what they would do if it were their wife or daughter. BTW, who is your surgeon? There is a great surgical oncologist in Nashville who was very helpful to me after I was diagnosed. Her name is Dr. Ballinger. She was awesome!

It sounds like you have a pretty small lump. Did they send you for an MRI to check the other breast? I have never had a breast MRI, but I have heard several of my recently-diagnosed friends say that they were sent for one before their initial surgery. One of them stayed with the lumpectomy and the other went with a double mastectomy (she had probable DCIS in the other breast and was already having a single mastectomy).

I would suggest asking your surgeon again, and letting him/her know your concerns. Also, I had my SNB injection just before my surgery, and I don't remember it being more than a couple of pin pricks. I don't do well with lidocaine, but I was able to tolerate it. I had other worries.

Take care,

Sherryg683 · 07-20-2008, 08:30 PM

I was ready to have them both whacked off but my Surgeon pretty much refused it. She didn't actually refuse but was very opionated that a lumpectomy and radiation held the same statistics as a mastectomy. So I did the lumpectomy. I am Her2++, Grade II. I don't think that made a difference because my cancer was very agressive and had appeared and advanced in one year...sherryg683

Sherryg683 · 07-20-2008, 08:34 PM

Rebecca, I didn't have any pain with when they injected the radioactive dye in my breast. They gave me valium, numbed it with a shot (not a cream), didn't feel a thing. I had a blue nipple for more than a year though..lol. My friend had a lot of pain with hers that was done a year before mine but they told me that they were now numbing with an injection..ask if they can do that for you if they don't already do it..sherryg683

rebecca0623 · 07-21-2008, 06:27 AM

Sherry - thanks so much for the advice - and it's great to see how long you have been NED!

Jinete789 · 09-24-2008, 05:14 AM

Hi Rebecca

I am so glad that you posted this question. I am currently having pre-op chemo to shrink my tumour (which is working so far, hooray), as my Onc is pretty much insistant that lumpectomy with rads is the way to go.

At first I was hugely resistant, and as Sherry said, I argued to have a double mastectomy, but didn't win.

The more I think about it the more rational sense it seems to make to go with the lumpectomy if the tumour shrinks sufficiently.

What did you decide in the end?

take care, Jin