Topic: 7 cm HER2 +, hormone - tumor, my sister

Aug 30, 2010 04:13 PM lago wrote:

Make sure you get another opinion. I have the same diagnosis. I'm doing my surgery first (tomorrow) then chemo and probably radiation.

There is so much to find out. This site has great info. It took me about 3 weeks of constant searching.

My BS would only consider chemo before surgery if it had already spread to other areas of my body. He felt the problems using chemo before is:

1. You might not be staged properly since they won't know for sure the size of the tumor

2. They might not know if you had lymph node involvement if chemo zapped the cancer... again a staging issue

3. What if the chemo didn't work? Then you have gone several months with delayed (surgical) treament.

Remember staging is important for your treament plan. Getting chemo before can put you in a stage II when you are really a stage III. While I'm supportive of getting chemo before in some cases those of us that are borderline of stage II and III or higher might want to consider the above.

Granted the down side is I have no idea if chemo is going to work on me but then again HER2+ gets chemo anyway. Guess it's just a wait and see for us HER2+ gals.

Best of luck

Aug 30, 2010 04:31 PM fightinhrd123 wrote:

Heres another side of the coin, not saying either is right, I knew i had pos nodes, had chemo first and no tumor or nodes were left at time of surgery.  My friend had same treatment, at surgery all her lymph nodes were still pos, and her tumor had grown.  She went on to have more chemo and is currently NED.  I personally dont care what stage i was, i know i had pos nodes, and a tumor, so it was either two or three, but i felt much better knowing chemo had killed all the cells!  I would def get another opinion though, always good to have two.

Aug 30, 2010 05:26 PM kayb wrote:

So sorry about your sister. I hope talking to her Oncologist will help her feel better about trying to shrink the tumor with chemo if that's what they recommend. When I was diagnosed a few months ago the surgeon wanted to schedule my BMX right away and I wasn't supposed to meet the Onc until after I healed from surgery. I'm the sort who just needs as much info as possible so I scheduled an appointment with the Onc. on my own. After discussions with him and much research, I opted for chemo first. I just needed to know if the chemo was going to work but I know a lot of women want to cut the tumor away ASAP. It really helped me to talk to the Onc. He told me that large tumors are commonly treated with chemo first but that even though mine was smaller it was perfectly reasonable to do chemo first if I wanted to - especially for HER2+ cancer since it can respond so dramatically to Herceptin.

I'm actually enrolled in a study designed at MD Anderson and am getting 4 rounds of FEC and then 12 weeks of Taxol/Herceptin. Tomorrow is my 4th round of FEC and my tumor can no longer be felt - even before Herceptin - so this worked out well for me. My Onc said before we started that if the tumor continued to grow while I was in chemo they'd stop and send me to surgery so I felt comfortable not doing surgery right away. I hope your sister has an Onc she's comfortable with and who'll answer all her questions. She's in the really scary time of DX right now and it's so easy to be overwhelmed. 

Oh - about the core needle biopsy - the core does go to pathology. So as long as they get a good sample of tumor cells they CAN get a good DX of the tumor. They won't be able to get a clear handle on all the possible lymph node involvement until surgery but if chemo works it will be killing cancer cells everywhere in the body. As lago said, having chemo first may mean they stage your cancer differently at surgery, but my Onc told me that the standard of care first line of chemo is an anthrycycline / a taxane / and herceptin for HER2+ cancers regardless of stage - so I'd basically get the same regimen before or after surgery. Your sister could ask about that.

I wish your sister (and you) all the best. Help her find a good team of doctors if you can so she can feel confident about her treatment. It helps so much.

Aug 30, 2010 05:36 PM windysea22 wrote:

Also, I don't understand why they are waiting to put her on Hepacin.  They know she needs it, so why on earth wait another two weeks until the oncologist is available?

Believe me, as a cancer patient myself, I know "waiting" is part of the deal.  But unnecessary waiting is just ridiculous.

Aug 30, 2010 05:56 PM windysea22 wrote:

Thanks Allison! 

It's nice to hear of someone else with a large tumor and I will contact my sister and see if she wants to email you with some questions.  

No, she doesn't care about saving the breast and is pretty much resigned to the mastectomy or radical mastectomy.  The surgeon told her that she wanted to try to shrink it if possible, in order to have enough left over simply to close the incision.

???

Hopefully the oncologist will order some STAT scans on Wednesday and we will know a bit more.  At the very least we should have the plan for the chemo, but with the tumor needing to be drained and already so painful, I almost wish they could move up the surgery date.  Thanks for the explaination.

Aug 30, 2010 05:57 PM deenah wrote:

I just typed a response and it didn't post.  I just saw Allison's response, and mine was almost identical to hers.  My tumor was also over 4cm, I was diagnosed by core needle biopsy and ultrasound measurements.  My core biopsy (I believe they took 3 seperate samples from 3 different parts of the tumor) showed by invasive and non-invasive ductal cancer.  I also got a PET/CT with FDG contrast that showed which nodes were involved.  Mine showed 8-9 under my arm, 2 under my breastbone and 1 in my neck.  The mammory and neck nodes bumped my up from Stage II to Stage III just like that.  Before I did my research, I was all for surgery first, but due to the inoperable mammory and neck nodes, I had to do chemo first.  I had previously gotten a second opinion at UCSF, which is one of the top cancer centers in the country, and they recommended chemo first too.  From the research I have done since I was diagnosed, it seems like the top cancer centers are doing neoadjuvent treatment more and more.  The reasoning UCSF gave me was that they wanted to make sure my cancer was responding to the chemo.  If they removed it all beforehand, they would never know if it worked or not unless I had a recurrance.  I was still going to go with surgery first until they told me I had no choice.  I just finished chemo less than 2 weeks ago, and had another PET/CT.  The cancer is completely gone from all lymph nodes, and may be gone from the breast (there was still some uptake of the contract, but my onc said that could be scar tissue with a few cells or it could still be some invasive or even non-invasive cancer).  The main tumor is so broken up by the chemo that they really can't tell until after surgery.  I never would have known that if I had done surgery first, so I am really glad it turned out the way it did. 

I would recommend your sister get a second (or even third) opinion and get a PET/CT with FDG contrast to see if the cancer is anywhere else in her body.  

 Feel free to send me a private message if you have any other questions.  Good luck to your sister!  

Aug 30, 2010 09:13 PM KAJDerby wrote:

My largest tumor was 7 cm and several smaller ones.  I had the surgery first and then chemo.  HER2 tumors can grow fast and big.  I was initially diagnosed with a core needle biopsy and scans, but when they got in there it was bigger than they anticipated.  This is not unusual.  This is an excellent website and there are so many ladies that can help.  The hardest part at first is the waiting to have someone do SOMETHING!  It seems like they have to do so much before chemo or surgery and I just wanted it out the next day.  Waiting for answers is exhausting.  Thoughts are with you and your sister.

Aug 31, 2010 08:04 PM bluedasher wrote:

On your question about core needle biopsy - they can tell that it is ductal because of the kind of cells they see. And a core needle takes out bigger diameter samples than a fine needle biopsy. The concern with needle biopsies is that sometimes they produce a false negative because they didn't sample the area with cancer. Since your sister's result was positive, that isn't a concern in her case.

There is a thread titled "Did you have chemo before surgery?" with a lot of comments about reasons to have chemo first. For tumors as large as your sister's, chemo first before removing the tumor seems to be the most common course of action. It's use is increasing even for small HER2+ tumors now as that thread discusses.

As others have mentioned above, exact staging isn't that important because the treatment is pretty much the same for Stage II and Stage III HER2+ tumors so that isn't a reason to remove the tumor before doing chemo. I think that the advantage of seeing how effective the chemo was against the tumor by doing chemo first is also valuable so chemo before surgery (called neoadjuvant chemo) provides some useful information in exchage for the exact staging information that is lost. 

Sometimes a sentinal node biopsy is done before chemo - whether nodes are involved can be one factor in determining whether radiation will be necessary after a mastectomy. You mentioned that one of your sister's nodes is involved. Did they biopsy it or is it just suspected because of swelling? If it isn't certain, a biopsy of that might be appropriate before they start chemo. 

Aug 31, 2010 08:43 PM windysea22 wrote:

Thank you everyone so much!

 I will go look for the chemo forum you mentioned.

 I have been browsing around your site and already learned so much, but I missed that one.  Hopefully we will know more tomorrow after she FINALLY sees the oncologist, 16 days after diagnosis.  I hope they order stat scans and start her on chemo immediately.

 Yes, the lymph involvment was noticed via biopsy.

 I understand about CORE vs FINE needle biopsies, as I have been involved with cancer support for about ten years on the group we formed for my cancer, a sarcoma, GIST.  www.gistsupport.org

I really appreciate all of the information.  Off to find that chemo thread.

Sep 1, 2010 10:54 PM windysea22 wrote:

Hi again everyone.  I am trying to figure out if my sister will also need the FISH test, and reading as fast as I can, but it's confusing. 

Her results said 

Estrogen and Progesterone receptors  immunohistochemistry is performed on slides blah blah.

 The tumor cells are negative but no intrisic control is present.  (so interpret with caution)

 Antigen retrieval is done using a citrate buffer at PH 6.0, with 25 minutes of microwave heating followed by 25 minutes of cooling.

For HER2 the Hepceptest protocol was followed.  (standard protocol DAB as detection reagent on DAKO Immunostainer...blah blah

HER2 Assay by Herceptest positive (3+)

So two questions for you guys.

1. Does this mean she could still be hormone positive?

2.  Does she need that FISH test to confim the Her2 +?

Thanks so much!

Sep 3, 2010 07:46 PM bluedasher wrote:

I don't know what the comment about no intrinsic control means.

I was 3+ for HER2 and asked my onc about whether a FISH needed to be done to confirm - she said she would order one if I really wanted it, but they generally trust the 3+ reading from their lab as when they have rechecked for such a strong reading it always has come back HER2+ from the FISH. Also, there seems to be some thought that even equivical HER2+ cancer benefits from Herceptin.

Sep 3, 2010 08:23 PM shells43 wrote:

Hi WIndy,

Back to the large tumor issue, mine was 9.7 cm and I'm a 38C, 5'6", 160. BS knew it was large, but didn't know the exact size until he got in there. There was never any question about having enough skin to close. I had a simple mastectomy and was relieved to get that sucker out. I have had chemo even though my nodes were negative, due to tumor size and my age <50. If she is happy with the treatment plan, then go with it. If she is uncomfortable waiting, then it might be worth getting a second opinion before chemo starts, if that is possible. Reading your latest post, it might not be. Good luck to both of you!

Sep 4, 2010 11:25 PM bluedasher wrote:

Windy, the suggested course of action sounds right to me. Most folks with tumors that large get chemo first. Many have been quite happy with going that way because it gives the opportunity to see how effective the chemo was.

I had something that showed up in my lungs. They spotted it because they did a lung X-ray to check for pneumonia when I had a fever during chemo. A follow-up CAT scan said that it was a calcium nodule (something harmless that forms around scar tissue). Just to double check, I had follow-up X-rays after 6 months and then after a year. It's stable which confirms that it is fine.

For finding information on TCH, there is a thread titled taxotere, carboplatin and herceptin - it usually is on the first page of the Chemo forum because it is quite active and has been so for years. I'd suggest going to the end of the thread and going back a 5 or 10 pages and reading the end of the thread to get a cross section of the typical TCH experience. 

The search function link is at the top right hand side of the page just below logout.