More info on HER2 positive friend of mine!

[TAG]

Hello,

I posted last week regarding my friends breast cancer situation.

I have more information that I would like to share with you. If anyone can understand her situation and help us figure out exactly what is going on.
Although she is going to a Breast Cancer Clinic tomorrow, I thought I would run it past you ladies first. She received a letter from her Oncologist today explaining her diagnosis to the Specialist she is seeing tomorrow. Any thoughts would be appreciated! I will attach a copy of her letter from her Oncologist to the Specialist.



Basically an abnormal mammogram was noted in August 2005. Then, in mid September she underwent a needle localization. Tumor was at the margin and was read as DCIS. Histologically, it was high grade ER negative, PR negative by our stains. At that point, the patient indicated that she wished to have a mastectomy because she did not want radiation therapy. In addition, she was small breasted. She had review of her slides by Dr. Smith who found three foci of frankly invasive carcinoma, two 1 mm (question microinvasion) and a 3mm focus. DCIS was present at one margin and a tumor embolus was seen in what was judged to be a lymphatic channel. By your stains, the DCIS was ER positive. The patient then underwent a mastectomy. No nodes were taken. Unfortunately, Dr. Smiths answer came back to me after the mastectomy was done. The patient was then returned to the OR a third time for axillary node dissection and 12 nodes were negative. A HER 2/neu done on the invasive cancer by Genzyme (we called to assure ourselves that the invasive cancer is what was tested) was positive with a ratio of 6.0. I told my patient that she has a stage I invasive carcinoma of the breast, T1aNO, with what your pathologist judged as a positive estrogen receptor and with Genzyme judged as a positive HER 2/neu. Our questions included the following: 1) What adjuvent therapy is indicated here? If her DCIS is truly ER/PR negative, then there is absolutely no role for a hormonal maneuver in my opinion. 2) As fas as I know, the invasive cancer was also receptor negative, but I am not certain that Dr. Smilth did any sort of receptors on that. 3) Is there a role for Herceptin here? 4) Is there any role for chemotherapy here? 5) This all started with the patients desire to avoid radiation therapy. Unfortunately, one margin on her lumpectomy was positive for DCIS. I do not feel stongly about radiation therapy here, but she is 40 and small breasted and we do not know which margin was positive for DCIS (invasive cancer was not at a margin). When I have looked at the role of post op radiation therapy in women with DCIS, who have DCIS at their deep margin, the literature is truly divided. I have gone both ways in my treatment of such women who are few and far between fortunately.

My take in the whole thing is a high grade invasive and probaly high risk cancer, despite its' small size. With her negative receptors, an OncoType DX will not be useful as I have no data in receptor negative node negative patients. I would be most interested in how you and your colleagues put this case together. It has been a particulalry difficult one for me. I have urged my patient to attent the Breast Cancer Clinic. I await your thoughts on this case.



Can anyone explain what all of this means? I told my friend that I would ask you ladies again for your thoughts!

Thanks,
Toni

[al from Canada]

Sorry Toni but this is far beyond my level of knowledge but would like to wish your friend the best of luck. I'm sure there are many women on this site who have encountered similar situations.

Kindest regards,
Al

[JohnL]

Sounds like your friend has been run from pillar to post with diagnoses, tests and treatments. However, the good news is that this sounds as though it has been caught very early, which is good.

I'm sure the breast cancer treatment centre will take the time to explain the situation to your friend but if you want a layman's 'unqualified' translation, I believe what this says is:

What was originally diagnosed as DCIS (a kind of pre-cancer made up of pinhead sized nodules which do not always develop into invasive cancer) had by the time it was examined post-surgery progressed to three very small invasive tumours.

The DCIS and the invasive microtumour was found to be hormone receptor negative (so it can't be treated with Tamoxifen and other related drugs). But one sample from the lymphatic channel showed it to be Eostrogen Receptor positive. So there is a question mark here, but the Dr is erring towards a view that he is primarilly dealing with an Hormone Receptor negative, but HER2 positive cancer risk.

HER2+ cancers tend to be more aggressive. The account for about 25 to 30% of breast cancers and are more common in younger women. They are also the type of cancer which often respond well to herceptin, a drug you have no doubt been reading about.

What seems to be occupying his mind is what - if anything - to do next. The cancer has been caught very, very early. The patient has had a mastectomy and the tumours are threfore removed. There is no node involvement (so no sign of local spread beyond the small tumours). Hence the chances of recurrence should already be very, very low.

In many centres the view could be that with a good surgical result the inconvenience and risk from chemo etc probably outweighs the small relative benefit of chemo. So no further action.

However, he's conscious of DCIS being found in a surgical margin (but doesn't know which margin, which means he's uncertain where to localise any radiotherapy), and that although tiny the cancer was high grade and HER2+. Also, the patient is very young.

Taking a belt and braces view, he's wondering about Herceptin. It sounds like this is not his main area of expertise (he's been looking up literature) so he's asking for a steer but signalling in his referral letter that he feels that a prudent approach would be to do either some adjuvant chemo or radiotherapy.

Adjuvant treatment is used to mop up any remaining cancer cells and minimise the risk of it returning. The relative reduction is risk offered by adjuvant chemotherapy is often quoted as between 30% and 50%.

In other words, if they were to tell your friend that they judged her chances of recurrence at about 10%, then further chemo etc might reduce that to 5% to 7%.

Showing above average medical sense he has pointed your friend towards a specialist breast treatment centre - where her situation will not be unusual and a wider range of options will be available.

They may recommend radiation therapy. They may recommend AC chemo. They may recommend Herceptin + Taxol. Or another combination. If they judge the risk of recurrence to be very low indeed they might even say that regular monitoring and tests may be preferable to undergoing treatment that in itself is not risk free.

Though your friend has been unlucky, she is very lucky in that it has been caught so early. I suggest she listens carefully, takes plenty of notes, pre-prepares a few questions and gives due regard to the advice of the specialists.

Good luck, I'm sure everyone reading your note will have their fingers crossed.

John L

[TAG]

John,

I wanted to personally thank you for your post regarding my friend. Thanks for taking the time to write all you did.

I printed it out and will give her a copy of it. Knowledge is power as fas as I'm concerned.

My friend did go to the center yesterday but left frustrated again. I'm not 100% on everything that was said because I wasn't there but I guess the bottom line is the Dr.s wanted to have a board meeting to figure out what the next step should be. The confusion is the 3 labs coming back with different opinions on the stains. 2 labs came back ER negative but the one pathologist from where she went yesterday is the one that said she is ER positive so the Dr.s want to get with the pathologist and figure it all out. My friend told me they do not give Herceptin unless it's with Chemo but I thought you can give Herceptin without Chemo. That confused us both so I thought I would run this past you. The center will call her on Monday with how their meeting went. They also mentioned she has a 6% chance of the cancer coming back in the next 10 years but if she's does Chemo/Herceptin her chance would be 3%? If thats true, I wouldn't do the Chemo/Herceptin. They also told her she is cancer free right now but it can always come back. This was pretty much all of the info I got from their meeting.

Any thoughts or ideas?

Thanks again,
Toni

I am no expert, a man, and not a suffer, but I have read that younger women are the group that express the most treatment disatisfaction, and are often not fully informed on the wider issues.

This previous post has some links that may be of interest. Both over and under treatment are reported as problems.

Impossible and unenviable decisions. I am sure your advice that information is power is correct. Statistics on chemo / RT etc are hard to come by for this age group. It is worth checking the base reference point when considering statistics as many(but not all) on chemo / tamoxifen etc are against no treatment, and not RT. RT and boost when compared to Tamoxifen and chemo as a base point is thought provoking. Even the stats have to be taken with a pinch of salt / treated with care - for example one trial includes any local reoccurrence as a death from cancer, which presumes that nothing can be done which is a bit of a stretch.

I help the items below assist if only in provoking lines of thought to follow.

My personal interest is diet, and particularly the impact of fat intake. I would suggest that you read the post on articles of interest on the breast cancer diet and the importance of omega three and six to breast cancer and related posts. A french trial based on exicsion of lumps showed a 70% differential in level of cancerous outcomes between the third with the highest EPA DHA and the lowest third. Fat in the breast bears a direct relation to intake, and can change compostion in three months, with change in diet. Fish oil is the best source - which is not the same as cod liver oil, and almost tasteless.

Appologies if your friend has already looked at the diet issues.

RB

http://www.her2support.org/vbulletin...9&page=2&pp=10

[Bev]

Hi, I'm far from being an expert but t2n0 @ 46. I would suggest getting 2 opinions. I'm doing AC, taxol/herceptin and rads. Being HER 2 + and youngish, the docs like to be aggressive. Chemo bites, but I've been able to deal with it with very few side effects. I'd rather prevent a recurrence, although therapy is not a guarantee. Your friend may be in a gray zone where either choice is legitimate, but after reading the posts on this site, I think I would go with the most aggressive treatment offered. Your friend is lucky to have you. Bev

[chrislmelb]

Toni, as it was more than DCIS and the margin was unclear i would definitely opt for chemo and Herceptin. It would be so bad for it to reoccur and know you (your friend) didn't do everything at this stage.
Take care
Christine

[JohnL]

Toni

No problem. It's what the site is about and I've had lots of help from others over two years on a steep learning curve.

First the good news. As I sort of hoped, they have indicated a very low risk of recurrence over the next decade. 6%. Not zero, but some people take a bigger risk crossing the freeway every day.

And remember, many of that tiny monority of people who have recurrence are also caught at an early stage and 'cured' for a second time.

But no risk always feels better than some risk, so what to do next?

The Onc's are debating an important question on the typing of the cancer as the best treatment options can be highly specific. Or, if they decide that there may be more than one cell type involved (yep, you do get mixed tumours) they may chose a less common combination of approches.

Yes you can take herceptin by itself, but in its use as an adjuvant 'stray cancer cell mopping up' treatment it is much more effective when combined with modern chemo combinations. You might say that the herceptin holds it down while the chemo beats the hell out of it.

So, if you do one, you have nothing to lose and most to gain by doing the other.

If they decide that the tumour might have been ER positive, then after any chemo/herceptin, they might (and that's a definite might) put her on a one of several drugs that are very, very good at stopping recurrence of ER+. Hopefully the samples or slides were frozen and not discarded by pathology, so they can be retested. Nobody wants to give people powerful drugs, many of which have side effects and health impact in themselves, without knowing they actually need them.

However, sounds like they are definitely going to do something (Good news). Probably Herceptin + chemo. I think most people on this site would show a thumbs up for that option if it is offered.

The real risk reduction might be only a few percent, but peace of mind doesn't come out of mathematics. Take it and relax knowing that even a low risk just got a whole lot lower.

It probably doesn't feel that way right now, but everything you've heard seems to justify popping maybe a small bottle of Champagne and drinking to the fact it could have been a whole lot worse and further help seems to be in the pipeline.

John L

[CLTann]

I want to express my opinion on this case since it is so close to my own situation. I was also diagnosed early and caught the small tumor, less than 1 cm. I opted for mastec, just like her, to avoid radiation. Then my major decision is to not getting chemo. As I look at the recurrence rate and the % reduction by taking chemo, the small improvement does not compensate for the worry of side effects of chemo and/or with Herceptin. This is my own calculated and studied decision. My onc respected my decision and agreed with me. By the way, I am positive on all three: ER, PR and HER2. I am on Arimidex, but my major treatment scheme is through diet and supplements. Olive oil, tumeric, mushroom pills, fish, small portions of red meat, vitamins, mixed nuts, flaxseed etc. I also do exercise, get good sleep so that the body can fight against any stray bad cells. The body has the inherent power to kill cancer cells and I try my best to build this activity. As we all know, everyone has some cancer cells in their bodies. It is the immune and resistance that keep most people healthy. Just my thoughts.

Ann

[AlaskaAngel]

If solid data was kept documenting the end results for those who decide NOT to do one treatment or another we could all have a much more educated and reliable answer. But unfortunately those who don't do treatment are not usually included in the statistical data.

This is not a statistical survey of any reliability, but I do find it interesting that of all the women I personally know who refused either chemo or hormonal treatment, none have recurred so far, and some of them were diagnosed at higher stages.

A.A.

[CLTann]

Alaska Angel brought up a succinet point: those who do well are not included in the medical report. Also, they are not likely be in a group of ours here. We are generally dealing and consoling the group probably more in the poorer performing patients who have more problems and mets.

It is well known that most of the chemo were given to those who do not need them or who do not respond to them. Medical science has not reached a point that can predict the chemo outcome or the need for them.

In this litiguous society, most oncs just follow the standard advice and order the chemo for patients who may statistically get even a small % survival rate improvement over non-chemo. Also, chemo infusion is a highly profitable business. I don't mean to be harsh on those oncs, but it is a fact.

So here we are. We certainly cannot speak for anyone else. It is one's personal decision. No one else, even her husband or parent, can make this life determining decision for the patient. However, it is in this complex relationship, we should share our knowledge and explain to our fellow sufferers so that the informed decision can be made.

Ann

I did chemo, more in ignorance than in wisdom, and it may have helped me. But the shocker for me was when I read that it actually works in less than 25% of those who get it.

[julierene]

I feel very strongly to give you my advice.

I was almost EXACTLY like her. I was practically Stage 1.

28 years old, 0 lymph nodes, 2 cm, IDC, ER/PR-, HER2+++ they gave me AC+T dose dense 2 weeks apart. Bilateral mastectomy. Found ER+ DCIS in other breast after mastectomy. Had removal of ovaries, because of the ER+ DCIS and to try to miminalize chances of ovarian cancer.

2 years later, nausea and backpain. Scans reveal liver and bone mets.

I don't know if Herceptin would have prevented this, but at least you know it will be directly targeted toward her disease.

If I had the chance to do it again, I would have taken the Herceptin as a preventative. Though the Paraplatin/Taxol/Herceptin therapy seems to be working, I would have much rather had it stay away longer.

You might be in a good situation here too because you can get the Herceptin Chemo Combo and hopefully get rid of any remaining cells in advance.

Expect the Worst, Hope for the Best.