Treatment questions

If you're HER2+ at all, it's unlikely you'll avoid chemo. That type of cancer grows VERY fast. The HER2+ protocol is normally for chemo before any surgery, so once you start chemo you have a while to think about what kind of surgery you want. You will also be able to see if you have a complete response from the chemo BEFORE the surgery. Or imaging will show how much the tumor has shrunk and less invasive surgery might be easier.

Do take into consideration that radiation is usually recommended with a lumpectomy and not always with a BMX.

I don't think hormone blockers are given or withheld depending on the kind of surgery. They are systemic.

Thanks for the clarification Beesie. Since I was ER/PR negative both times, my understanding of hormone therapy is just what I read on these threads.

jenck, I recommend that you talk with your doctor about hormone medications that do not (or are less likely) to cause vaginal atrophy. There is a pretty big difference between different types of hormone medicines - the drugs are in different classes, and they work in quite different ways. Of course, if you decide not to take any I respect your decision.

This was my experience: Tamoxifen did not cause any vaginal atrophy problems for me whatsoever. Ovarian suppression (Zoladex) combined with Aromatase inhibitors (Aromasin), and then Zoladex combined with Faslodex have caused some issues, but have been okay overall.

Best wishes whatever you decide, I hope you find a good solution.

jenck, have you spoken to a medical oncologist? To MinusTwo's point, since you are HER2+, it may be recommended that you have chemo prior to surgery.

HER2+ cancers are very aggressive. Chemo is recommended for even the tiniest HER2+ cancers, regardless of the surgery that the patients chooses to have. That's the bad news. The good news is that because it is so aggressive, lots of work has been done on finding meds to effectively treat HER2+ cancers - so you actually have more treatments available to you than those of us with any other breast cancer subtype. The other good news is that if you follow the recommended treatment protocol, which would include chemo, Herceptin and endocrine therapy, your long-term prognosis will be excellent, possibly better than if you had the same diagnosis but were HER2-.

Definitely speak to an MO prior to making your surgery decision.

jenck - I think you're missing that the hormone therapy is NOT a priority here. You need to talk to your MO and get started on chemo for the HER2+. Then surgery. Then you can maybe move on to hormone therapy while you're getting Herceptin (and maybe Perjeta) infusions for a year.

That gives you lots of time to explore all the different threads on BCO about the various hormone drugs and what people have to say about their side effects.

Here are screenshots of the NCCN Treatment Guidelines. These are the gold standard treatments guidelines that most doctors follow. I've highlighted the relevant points specific to your diagnosis.

According to the guidelines, chemo should be done first with HER2+ cancers if the tumor is a greater than 2cm in size (a T2 tumor) or if there are any positive nodes (N1):

In your case, your tumor appears to be smaller than a T2 (being 1.3cm, although imaging isn't always accurate so this could change once you have the final pathology) but you don't know your nodal status. Normally lymph nodes are tested at the time of surgery, however since your nodal status could change the sequence of your treatment, yours might be a situation where the nodes should be checked first, or at least evaluated with an MRI (have you had an MRI?) prior to surgery. Maybe not, but this is something that should be discussed with a Medical Oncologist.

As an FYI, here is the screenshot that details the systemic treatment recommendations for your diagnosis. I've highlighted the recommendations assuming that you will be node negative, but if you are node positive, you can see the recommendations just below my highlighted box.

jenck,

I am also a Kaiser patient (Northern California) . One thing I would ask you to consider is speaking with another mo, either at your Kaiser facility or another one in your area. The original mo to whom I was assigned was not a good fit for me and I switched early on. The second mo really listened, answered my questions and always treated me as an intelligent person. She shared many, many research papers with me and was always willing to honestly discuss all proposed forms of tx. I did get a second opinion outside of the Kaiser system (self pay) and my Kaiser mo was totally in favor of it and she communicated well with my second opinion doc. BTW, I have lived with stage IV bc for almost 9 years without any progression. Although no one can say exactly why I’ve done well, I certainly give credit to Kaiser’s approach and care. All the best to you

jenck,

I agree with what beesie said. I also want to reiterate that since you don't seem to have full confidence in your current provider, please seek a second opinion.

My story is very, very unique and I almost hesitate to tell you about it. It is very important to understand just how unusual my dx was. After a bmx my staging as IIB, grade 1. I agreed to enter a clinical trial (IV chemo) and had an EKG as part of the trial requirements. EKG showed fluid around my heart so PET scan was done. The fluid turned out to be nothing, but a spot was seen on my upper femur, and I had a complete pneumothorax (no symptoms!). After a week in the hospital with a chest tube, a biopsy was done on the spot and it was an exact match to my bc and yes, it was grade 1. The scan was only done because of the need to evaluate the fluid around my heart, the spot on my femur and the collapsed lung were incidental findings! Many, many doctors do not do scans on lower stage patients when there is no reason to suspect mets. Scans are not harmless. They expose you to a lot of radiation, create a lot of anxiety and are very expensive. Yes, my scan did pick up a bone met that no one would have suspected but I can't emphasize enough how unusual my situation is. Chemo? No, I have never had IV chemo. My port was installed (that's what caused the lung collapse) in anticipation of chemo but when the bone met was confirmed, my tx plan changed. I have only been on AI's. I've tried all of them and did use my port for Aredia infusions (older bone strengthener) for two years as well. I also use it for blood draws and for my PET scan nuclear injections.
I hope this helps and again, I hope you understand how rare my situation is and that it doesn't cause you any more worry

jenck,

Yes, the bone met was an incidental finding. Not only did it eliminate me from the clinical trial, but we had to re-evaluate my entire txplan. Both my mo and a second opinion mo I saw outside of Kaiser (self pay) agreed that chemo or an Aromatase inhibitor were reasonable ways to go and left it up to me. My mo supplied me with lots of info which also helped my decision making. So, I went with aromatase inhibitors (I’ve been on all three) figuring that chemo would always be there. I did have rads to the bone met too. Almost 9 years later and I have had no progression. Go figure!

Jenck: Beesie posted definitive answers about surgery first vs chemo first. You can't guarantee that any surgery is going to remove everything since it rarely does. Nor can you guarantee that micro dots haven't already released into your lymph or blood system. Chemo first stops the growth cold. Also hopefully shrinks any tumors so that the surgery isn't as extensive. And maybe even eradicates the tumor so surgery is only a 'mop up'.

The spread isn't during surgery isn't really an issue as much as what's already happening microscopically moving through your system.

I had serious discussions with my MO about this very issue. He was adamant that I don't fool around but get on chemo ASAP. I'm amazed that Kaiser - a well known health care system - isn't discussing this reality. Possibly Beesie or someone else will present some stats (which I don't do) - but there's really no questions that the protocol for HER2+ cancer is chemo first.

There is a demarcation line with Her2+ tumors which may dictate whether to do chemo first or administer it after surgery. Generally, this would be a 2cm or less and node negative clinical assessment, but of course this would be a case by case decision. For those smaller and lower risk tumors, which under the old staging classification was Stage 1, surgery first may be acceptable with adjuvent chemo. The main thing that has driven chemo before surgery (neoadjuvent) was the approval of Perjeta for early stage Her2+ tumors in 2013. The FDA approval stated it should be used for tumors 2cm or larger, or for smaller tumors with positive nodes, and combined with Herceptin and a taxane. From that point many more Her2+ patients have received chemo prior to surgery and it has become more the norm. Neoadjuvent chemo had previously been used predominantly for triple negative tumors or for those with a tumor close to the chest wall or skin to help achieve clear margins, or to attempt to shrink a tumor and make it more easily removed by lumpectomy. Her2+ tumors that are Stage 1 are also potentially eligible for 12 weekly infusions of Taxol and Herceptin only, rather than the use of a multi-agent chemo regimen. The determination of which approach to use is a combination of recommended guidelines and your individual clinical presentation and risk factors, as determined by your treatment team.