Need help with decisions on next step

hickjen01

Hi.. I’m back, this time it’s early stage cancer. I’ve seen a surgical oncologist who put me on Tamoxifen- waiting on a surgery date in Nov for double masectomy.

History:

7/12/21-yearly mammogram

8/4- diagnostic mammogram and ultrasound

8/25- biopsy

8/27/21- diagnosed IDC er/pr+ HER2- stage 1 Non-palpable lump 23mm deep against my chest wall. No ct/MRI/pet scan tests I’m currently waiting to see if my oncologist can do the onco type score on my original biopsy. Due to the delay in my double mastectomy my oncologist has started me on Tamoxifen. I’m 47, and pre-menopausal with partial hysterectomy (still have 1 ovary)

Questions:

I’m concerned about waiting until Nov to have my double masectomy. I’m asking for your opinions… should I wait until Nov to have my surgery? My oncologist isn’t ordering any scans because he doesn’t think it’s necessary due to my early stage. I’m nervous about that decision. Ive have a strong family history of bc, 4 maternal aunts (1 death) and 1 paternal aunt. How do I convince my oncologist to order scans?

The reason for the delay on the double masectomy is because the plastic surgeon is on maternity leave. My tumor was found via imaging, it’s small yet non-palpable. I have extremely dense breast tissue.

Also, should I wait until Nov to have my surgery? Seems such a long time to wait. My oncologist started me on Tamoxifen.

Thanks for any feedback.

1982M

What grade is your tumour? What is its estimated size? I wasn’t sure if you meant it’s 2.3cm or that’s how deep it was. Do you have other plastic surgeons available for the reconstruction you want?

This is a very personal choice. Did your oncologist seem worried with the wait?

The only additional scan I got was a breast MRI- I have dense breasts. They could not see it on mammogram. tumour was estimated to be 1.5cm. Turns out it was only 8mm (and why no one could palpate it). I would push for the MRI before deciding to wait.

hickjen01

I think I’m grade 1, tumor size is around 13mm-22mm. Thank you for your reply, I will reach out to my oncologist and ask for a breast MRI.

moth

So... I would want an Oncotype done right now on the biopsy sample. I really think that will help fill the picture and give more complete info about the aggressiveness and recurrence likelihood of this cancer.

Do confirm it is Grade 1. Grade 1 does mean it is the slowest growing type and it does give you more leeway to decide on treatment. Also how strong is the ER & PR because that will determine whether endocrine therapy is likely to control it.

And I also was just hearing at a breast cancer conference about neoadjuvant (meaning before surgery, as opposed to adjuvant which is after) treatment with hormonals is something that is becoming more common so yes, starting on the Tamoxifen now.

Re the surgery - I personally would not want to wait without repeat MRIs in the meantime to monitor the lesion. I would also probably look for another surgeon and also consider whether a lumpectomy is off the table. But I'm not a patient person .... I had surgery a week after diagnosis lol.

Re the whole body scans - they are officially not recommended unless clinically indicated by symptoms. So if you are not presenting with any symptoms, then they shouldn't be scanning. If they've checked your liver values, palpated your abdomen, if you don't have ongoing pain in bones or joints or any neurological problems, then it's probably not necessary to look for mets.

best wishes,

Rah2464

I am going to second the push for a breast MRI. I also had dense breast tissue that didn't image (was never seen on a mammogram or sonogram). A tumor close to the chest wall is a bit of a different animal. I would want as much information as possible to confirm ok to wait until November (Oncotype, further imaging). Remember that even with the mastectomy you may still need radiation if they cannot achieve margins at the chest wall. I had the same issue going in. Left side, very close to the chest wall. However, my mass was grade two with some more aggressive characteristics. If you have to wait until November, I do like the idea of taking Tamoxifen to quiet the tumor. You will probably have to discontinue it about one - two weeks prior to your surgery as there is a clotting risk with the medication.

hickjen01

Thank you for your reply. I’m a stage 1 and grade 1- with the possibility of it being grade 2 after surgery. Er/Pr at 95% each.

I appreciate your explanation of why a breast MRI might be beneficial. I will follow up with my oncologist soon.

My oncologist (first one) is checking on the biopsy sample to see if he can run the onco type score.

I did not realize that if I chose a double mastectomy that I could still need radiation to my chest wall. One of the main reasons why I’m not choosing lumpectomy is to avoid the radiation.

moth

The decision about radiation is made after surgery and Rah is right, the closer to the chest wall, the more likely that a radiation oncologist would recommend rads as you might end up with what they call "close margins", in which case radiation to the area would add additional lowering of the risk of recurrence.

The other issue is lymph nodes - usually they will do sentinel lymph node biopsies during the surgery and if any of those nodes test positive for cancer then you would again need radiation.

You might want to check out this article on recent research of lumpectomy v mastectomy https://www.breastcancer.org/research-news/lumpect...

and if you haven't yet, have a look at the surgery section of the treatments info page https://www.breastcancer.org/treatment/surgery