7 cm HER2 +, hormone - tumor, my sister

windysea22 · August 2010

Hi everyone.

I am a cancer survivor (GIST a sarcoma) and also helped found the largest support group for GIST patients in the world. So, I thought I knew quite a bit, but...

My sister has just been diagnosed with breast cancer. Her tumor is 7cm, and she has had a core needle biopsy only. One lymph node showed involvement too. She has also had the tumor drained somewhat, and has a drainage tube for that, because it was so painful.

Finances were extremely tight, and she was convinced it was a cyst, and without health insurance, she let it go for two years that she knows about, until it started growing and becoming even more painful.

From the core-needle biopsy they say ductal, but my first question is, how can they know that from a core-needle biopsy?

She is meeting with the oncologist as I type this. She met with the surgeon first, who wants to try to shrink the tumor with chemo prior to surgery, as she doens't feel she has enough skin to close with.

I am trying to research as much as I can, and I am pretty good at it, but there is just SO MUCH out there about breast cancer, and I know how patients can help cut through the crap and help one another out with the most important stuff.

So? A little help? Any and all is welcome, including information about clothes, skin products, mouth issues, what is this about fingernails, as well as, OF COURSE, treatment options and things to watch out for?

lago · August 2010

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

windysea22 · August 2010

Unfortunately, her surgeon says they need to try to shrink the tumor before surgery, because she is afraid she will not have enough skin left to close the incision.

I have never heard of a 7cm breast tumor before, so researching this has been a bit problematic. She is large breasted, but not obese, 5'6" 180#s.

So frustrating, because I do have my doubts about the core-needle biopsy reliablility, and would much rather see pathology on the entire tumor.

fightinhrd123 · August 2010

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.

Alyad · August 2010

I agree with fightin- I don't know how important staging is-with a 7cm tumor its stage 3 regardless of nodes. you're doing chemo and rads anyway- if there is an advantage to doing chemo first- usually its for breast conservation- if they can shrink the tumor enough to be able to remove it and not have to do a masectomy I think. A women in my chemo thread (usually there is a thread for every month- all the people starting chemo in Sept 2010 for example- you can all go through it together).- she had presurgery chemo and then found out the chemo hadn't done a thing after surgery- so went thru more/different chemo. I also have read where people have had their tumors completely dissappear, clear nodes after chemo. I love hearing about when that happens- if the chemo can zap a tumor of millions of cells think about what it can do to any random ones floating around I might have had before chemo.

Is the BS talking about masectomy and still not having enough skin to close? Has your sister had an MRI? That can give a better picture of the tumor size/location.

windysea22 · August 2010

No they haven't done any scans at all, which just makes me crazy.

The surgeon said she was waiting for the oncologist to order that stuff.

I had my neice call and try to get the oncologist's office to just order the danged scans (bone, CT or MRI) before her first appointment on Wednesday, but they said no, "doctor wants to see you first."

(The appt. today was surgeon, not oncologist, I had that wrong)

Anyway, the oncologist is just going to order the scans and then see her again to discuss them, so to me, it's a complete waste of time. grrrr

windysea22 · August 2010

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.

allisontom911 · August 2010

I just wanted to give what I did. My tumor was 4.6cm buy my lymph node was over 6cm per bi-lat breast MRI and by ultrasounds measurments. I got my diagnosis by the core-needle biopsy also.

We did do chemo first to try and see my response, it had nothing to do with trying to save the breast. How do you know if your chemo is working if you remove the tumor. Some people do not respond well to one kind and need to be changed. I was all for that. I did chemo, TCH for 6 rounds every 3 weeks, then surgery and then radiation. Your sister will be on Herceptin for a year, that is a given with HER2.

Please feel free and send me a private message if you wish

windysea22 · August 2010

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.

bejuce · August 2010

I'm sorry to hear about your sister, but please know that HER-2+ breast cancer is now considered good due to Herceptin and other drugs on the market. And don't be afraid of the 7 cm tumor, with HER-2+ breast cancer, it can actually get big fast. Mine, for example, as 10x12 cm. I had no choice but do chemo before surgery, and at my mastectomy I had no tumor left, just a few cells on lymph nodes. Chemo before surgery is given when the tumor is so large that a good surgical outcome is not possible right away - the tumor must be shrunk first,

Good luck to your sister and your family!

deenah · August 2010

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!

lago · August 2010

So far they think my tumor is 7cm maybe 6cm and I am small breasted (A cup) and a small person (5'6" @ 128 lbs). There are tumors even bigger than this. Do a search for big girls. You'll find us.

KAJDerby · August 2010

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.

mtndawn · August 2010

I had two tumors, measuring 5+ cm together. These suckers aren't anything to mess around with. They can go from in situ to stage 3 in no time. Not all are that aggressive, but they can be. My oncologist put me on chemo first, which seems to be the standard now for larger tumors. The way she described it for me was this: we're not worried about the cancer we know about (in breast and lymph nodes), but rather about any that has spread. If we do surgery, we have to wait 3 weeks before we can do chemo. We want to get to anything that may be circulating as fast as we can, so we do chemo first. I was diagnosed on a Friday and started chemo the following Monday. I finished 4 weeks ago, and I am awaiting surgery. My tumors are no longer palpable, so I know I have had a good response. We'll find out how good after surgery. If I had done chemo later, I wouldn't know if the cancer responded or not. I am so glad we went with the neo adjuvant protocol. Doing something, anything, though is definitely better than any waiting you have to do.

As for staging, we knew I was at least a stage III, due to tumor size and confirmed lymph node involvement. My pet scan determined where I was from there. Looking at node involvement and the fact it hadn't spread beyond nodes, put me at IIIa.

From what I've read, if you do chemo first, the onc should be able to determine if it's working after 2 rounds. If it isn't, they would change the protocol.

BTW, my protocol was TCH. My side effects weren't too bad, but everyone is different. I lost my hair, had digestive issues, fatigue, and taste issues, and I may loose my fingernails. If your sister does TCH, there is a thread for it in the chemo forums.

Your sister is lucky to have you.

Hugs,

Dawn

bluedasher · September 2010

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.

bluedasher · September 2010

Your last paragraph is very short but asks very big questions. There are already some threads that can help with the answers.

As far as what chemo regime - the short answer is that the two most standard ones (which have been tested in large drug trials) are AC-TH and TCH. AC-TH means that Adriamycin and Cytoxan are given first for 4 cycles and then Taxotere (or sometimes Taxol) and Herceptin are given for 4 cycles. TCH means Taxotere, Carboplatin (or sometimes Cytoxan) and Herceptin are given for 6 cycles. In either case (at least in the US) Herceptin is continued for the rest of the year.

There are two recent threads that discuss the two regimes on the HER2+ forum:
AC-TH regimen anyone?
What chemo treatments are you on with Herceptin?

AC-TH was the one that was tested in some of the earliest trials because Adriamycin was the first chemo drug that they found particularly effective against HER2+ cancers (before Taxotere and Herceptin were in use). However, Adriamycin and Herceptin can both have a side effect of reducing heart funciton in some women. When they are both used in AC-TH, significantly more women get the problem even though the two drugs aren't given at the same time. A trial, BCIRG 006, was done to test TCH vs AC-TH vs AC-T and TCH was found to be about as effective at preventing recurrence but with much lower risk of heart problems.

Some oncologists still prefer to use AC-TH because the therapy has been around longer and therefore has been in more clinical trials.

As far as your question about side effects and what to be prepared for, side effects can vary a lot. There are two threads pinned to the top of the chemo forum about tips for getting through chemotherapy and a shopping list of stuff to have on hand just in case. It can be kind of daunting but remember that everyone doesn't get every side effect, it is just nice to know that whatever will be needed is on hand.

If your sister does TCH, there is a thread in the chemo forum titled taxotere, carboplatin and herceptin where those of us getting that regimine chat. It was started in 2007 but quite a few women who currently or recently had this chemo are still using that to discuss how they are doing and give each other tips for coping. It is over 200 pages - you could read just part of it to get some idea of side effects for this chemo.

Usually each month there is a thread in the chemo forum where people starting chemo that month all chat. That is a group of people taking a variety of chemotherapies but all going through it at the same time. I found both the thread for my month and the TCH thread helpful.

windysea22 · September 2010

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. http://www.gistsupport.org

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

heatherbless · September 2010

Hi: I also had a larger tumor and neoadjuvant chemo-- responding really well. When your sister makes a decision about surgery, etc.--look in to Dr. Marga Massey who has an office out of Chicago. Website- www.drmarga.com

great skills in breast reconstruction. best, heather

windysea22 · September 2010

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!

mmm5 · September 2010

With a 3 Plus on the Her2 test that is usually pretty definitive that she is Her 2 positive

bluedasher · September 2010

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.

windysea22 · September 2010

Yeah, after reading more it seems pretty certain it's HER2 positive.

The most inconclusive part is on the hormone - evaluation, but it looks like the chemo is the same either way. From what I have learned so far, positive there would be better anyway. ??

She starts chemo on Wednesday, surgery probably around Christmas.

She will have Hepercin, and TCH.

The great news is that her bone and CT scans came back clear, other than the previously known lymph involvement, and a couple of questionable areas on bones, but all are explainable by injuries and disc disease, and the radiologist said that was far more likely. There was one slight nodule on her lung, again, questionable as far as anything to worry about, but subsequent scan will probably tell us more.

Her heart echo was great. They are on a housecleaning binge this weekend.

Thanks so much for directing me to the tips thread. It was incredibly useful!

****can someone tell me how to do a "search?"********

I am looking for information on TCH and side effects, but that forum has almost 50 pages of topics. Is there a search function I am missing, or does anyone have a link to that kind of thread?

shells43 · September 2010

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!

windysea22 · September 2010

She may have misunderstood the surgeon about the closing thing.

She is overwhelmed with information right now.

Her oncologist seems very thorough, and the first 2nd opinion she could get would be weeks from now. She is very pleased with him, and felt confident in the surgeon. I am tring to double check everything for her, but so far, the info and care she is getting seems quite good, unless I get a head's up from you all that she is on the wrong track and why that is, I need to let her do this her way.

I am able to read all the scan reports myself, for example, and have asked her to send me the CD's themselves so I can look for myself. I got pretty good at that over the past ten years.

As a cancer patient myself, I know the value of second opinions, there is an essay on our website I wrote about just that BTW, and I counsel many people on our listserve to get one. Then again, my cancer is extremely rare and there are really only a few "expert" centers out there. In addition, a center with certain active clinical trials is important for resistant GIST. With breast cancer being so well known, and Huntsman and their associates seem well informed, for now at least, it seems like she is in good hands.

bluedasher · September 2010

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.

lago · September 2010

OK here's my update. Remember I didn't have chemo first. I was originally told my tumor was 7cm. Also they felt that since the MRI and physical exame indicated my lymph nodes weren't infected BUT with such a large tumor, grade 3 and HER2+ usually it is in the lymph nodes

Well my tumor ends up only being 5.5cm and 0 lymph node involvement. In my case I'm glad we didn't do chemo first. Now I know for sure that my lymph nodes are clear as well as the margins. Knowing my tumor is a little smaller than we thought is good too.

I won't get out of Chemo but I do hope I might get out of radiation. Usually the tumor has to be under 5cm to get out of radiation but part of my tumor was DCIS. Not sure if that makes a difference).

Hope your sister is moving forward with her treatment.

7 cm HER2 +, hormone - tumor, my sister

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