Recent ER+/PR+ HER2+ TX questions.
I was recently diagnosed with ER+/PR+ HER2+ invasive ductal carcinoma following the discovery of a lump in my breast. I had a lumpectomy where they were able to remove all of the tumor with good margins. During surgery they collected 20 lymphnodes and sent them to pathology, only one of which was cancerous.
I just saw the oncologist who suggested 1 year of chemotherapy + radiation and “no additional scans needed” as he had confidence it hasn’t spread to any other part of my body.
I feel like I should seek a second opinion and possibly look into immunotherapy, hormone blocking therapy, or only the targeted medication by itself and not in conjunction with the actual chemotherapy drug. The TX recommendation seems kind of generalized or like a “one size fits all” approach where a few minutes on this site has led me to find a multitude of different treatments that exist that seem just as beneficial and less toxic to all body systems as chemo.
Theoretically, i feel like my body is cancer free right now, with the nodes and tumor being removed completely, and the “confidence it hasn’t spread to other areas” my doctor seems to have. It makes me feel like I’m signing up to needlessly wreck my body and immune system with chemotherapy for potentially no benefit if there’s truly no cancer anywhere else; however, a PETscan would be the only way to confirm if there was or wasn’t any residual cancer cells hanging around somewhere. So why wouldn’t he suggest getting one before jumping into another surgery (for the port) and chemotherapy? Especially if the breast cancer has already metastasized to my lymphnodes, what makes him feel that it’s safe to assume it hasn’t made its way into another area if a PETscan isn’t “necessary” ?
So much information to process and I am no doctor, but I hope my questions and concerns make sense to some of you.
I am located in Iowa and also welcome any suggestions for oncologists to seek a second opinion from!
Thank you for taking the time to read.
Comments
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Hi breuklan, welcome to the board but sorry your find yourself here.
So... the reason that your doctor wants to do chemo is that it is standard of care, and the thing is, until herceptin (& perjeta) came along, HER2+ cancers were very dangerous and had some of the worst outcomes, right up there with the triple negatives (which is me). Now the new drugs have changed the picture *a lot* --- & now this cancer is considered very treatable but it has to *be* treated.
Metastatic progression just requires a single cell to escape - way too small to show up on a scan. So we can have clear scans for years and then have a recurrence. This is why the systemic treatments, the chemo, the monoclonal antibodies (like herceptin) and the hormone blockers will all need to be used to try to reduce the risk of a metastatic recurrence.
You could insist on scans now, just to make sure you aren't metastatic de novo but I think it really depends on your agency's policies and your insurance coverage. Depending on risk factors, not all facilities will do the scans and not all doctors will recommend them. (btw, CT as far as I understand has less false positives, and definitely exposes you to less radiation, so it may be something to consider if you're asking for a scan. It is also cheaper than PET scan)
Now, having said all that - it's your body, your choices. Your doctor should provide you with an explanation of what your baseline risk of recurrence is, and what the benefits of the proposed treatments are expected to be. If you haven't received all the information, one place to see outcomes is the Predict website. It will show you the number of pts alive at 5, 10, & 15 years with surgery alone or with addition of chemo, hormones and herceptin. https://breast.predict.nhs.uk/tool Perjeta gives its own additional benefit which your doctor should be able to quantify for you if you are prescribed it.
You may also wish to check out the Triple Positive Thread https://community.breastcancer.org/forum/80/topics... & get an idea of how others with this diagnosis are handling their care and treatments.
If you add your diagnosis to your profile and change the settings to public, we will be able also give info specific to your diagnosis.
Best wishes,
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" a PETscan would be the only way to confirm if there was or wasn't any residual cancer cells hanging around somewhere"
breuklan, unfortunately that's not entirely true. A PET scan will show if you have a metastatic tumor of a certain size but a PET scan will not show if you have residual cancer cells sitting somewhere in your body, waiting to develop into a metastatic recurrence at some time in the future. There is no test currently available that will tell you that.
Chemo is given to non-metastatic patients to address the risk that some rogue cancer cells did escape the breast and move into the body, prior to the surgical removal of the cancer from the breast. Most breast cancers takes years to develop to the point where they are large enough to be discovered - those cancer cells have all that time to spread. The decision on whether to recommend chemo to a patient is based on the pathology of the cancer, and the likelihood that some cells might have moved into the body. HER2+ cancers are extremely aggressive, amd even very small node negative HER2+ cancers present a high enough risk that chemo, plus Herceptin, is usually recommended. The good news is that with the combination of chemo & Herceptin, followed by anti-hormone therapy for patients who are ER+, the long-term survival rate for those with HER2+ is now among the best, if not the best, of cancer subtypes.
While a second opinion is a good idea if you are questioning the recommendation, I can guarantee you that every MO will recommend chemo + Herceptin to any patient who is HER2+ and node positive. The NCCN Treatment Guidelines are the gold standard used by most MOs in North America (and elsewhere). Here are their current guidelines with regard to system treatment for patients who are hormone positive and HER2+:
Edited to add: moth, we were answering at the same time, with pretty much the same info!
Edited again to correct spelling of breuklan's name... sorry for misspelling! Hope that you return to comment or with more questions.
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moth and beesie are spot on. I am also er+/pr+ her2+ (triple positive). I was given a pet/ct scan before starting chemo even though my oncologist felt nothing had spread beyond my one node. Fortunately my scans were clear, but there is no scan that can show microscopic cells that may have gone rogue and just not seeded/grown yet. I followed my oncologist’s recommendation and a year ago I started my treatment “marathon” of TCHP, rads, and hormone treatment. I just finished my final HP infusion a few weeks ago and now just continue with hormone treatment. Your questions and concerns are certainly valid. I’m just north of you in MN. You could always visit Mayo in Rochester, MN for a second opinion. I do honestly feel being triple positive you will most likely than not find another oncologist will recommend a similar treatment path, but in the end it’s up to you! It seemed like such an impossible path at the start, but now on (mostly) the other side I am happy I went through the treatments and take solace in the fact I did all I could to kill any rogue cells.
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Surgery is localized treatment; chemo is systemic and can wipe out any cancer cells that escaped from your lump and are just circulating in your bloodstream and/or lymphatic system, looking for a new home. No PET scan can detect those cells, so while you feel like your body is cancer-free, there's no way to know that for sure. You really don't want your cancer to set up a new home, particularly in the liver, lungs, or brain. (Brain mets are often caused by HER2+ cancer.)
HER2+ cancer is a marathon, but you won't be doing "a year of chemo." You'll be doing 5-6 months of chemo and then Herceptin (and possibly Perjeta) for a year. Herceptin and Perjeta aren't forms of chemotherapy; they are targeted therapies designed to shut down the overexpression of the HER2 protein which told your cancer cells to replicate, replicate, replicate.
Right now, immunotherapy is not used for HER2+ breast cancer, just triple negative breast cancer. If you are also ER+, your doctor will advise that you do hormonal therapy, typically after you finish chemo. But, hormonal therapy is not a substitute for chemo + targeted therapy for HER2+ breast cancer patients!
Look, it seems like a lot right now. I was where you are, six years ago. But, now I'm here, living my normal life. It was worth it.
((Hugs))
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I am also triple positive. I have done a ton of research since my diagnosis in November and I personally came to the conclusion that chemo is an absolute must. Herceptin is a targeted therapy that is very successful at treating Her2+ breast cancer BUT it must be initially taken with a taxol chemotherapy to work effectively. My understanding was that the hope was that it could replace chemotherapy but it doesn't.
The cancer was found in one of your lymph nodes. That means that cells have for sure broken off from your tumour. There could definitely be rogue cells in your bloodstream or lymphatics. Chemo+ herceptin is your best defense right now. Does your pathology report mention lymphovascular invasion?
I am 18 days into my first round of chemo and it isn't as bad as I feared. There are lots of meds to manage side effects. I want to be aggressive now.
I recommend using the predict.uk breast cancer outcomes tool. That will tell you your survival odds with and without chemo. Also consider that without chemo, the tool doesn't allow you to include trastuzumbab (herceptin) which is an accurate reflection of reality because as far as I know, no oncologist will prescribe herceptin.without taxol.
I'm so sorry you are here. It is so scary and the options suck but im still grateful to have them, its better than the alternative.
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thank you everyone for helping ease my mind. Sorry I did not get back to this sooner.
I have started the recommended treatment that was originally posted. Your assurance certainly got me moving forward!! Day 1-3 seemed to be easy enough. Day 4 was a different story!!! Trying to manage side effects currently. Hopefully I’ll go into the next session much different because I’m not sure I could handle feeling like day 4 every three weeks. Brutal.0
