Standard of Care? Treatment Options?

Anne2871

Hello. First time posting. After a routine mammogram on July 2nd, 2019, I had a small mass (6mm) on my left breast (upper left quadrant). Needle biopsy was negative, but suspicious. I had an MRI with contrast several weeks later (after healing, for clearer imaging). It showed some contrast, and ultimately I had a diagnostic lumpectomy. (After being told to come back in 6 months). 6mm tumor was positive for Invasive Ductal Carcinoma with clear margins, Stage 1, grade 2. (Report said well-differentiated, so I'm unsure how the grade is 2). Er/Pr+, Her2- One month later I had sentinel node biopsy which was negative 0/3.

Fast forward to my radiology oncology appt. No chemo was recommended even though I never received an oncotype test, which I have since requested and am awaiting results. The radiologist recommenced 6-8 weeks of whole breast radiation, which she said is the standard of care, and she wouldn't even listen to my questions. While I am open to the “standard of care" I still would like to learn more about other options that may work for me. For example, the more abbreviated radiation therapy, (3-4 weeks), brachytherapy, and proton therapy. All of which are options near where I live, although some may not be covered by insurance. I was told that since my tumor was only 6mm and that my margins were clear, oncotype score doesn't matter. Is that true?? Since the lumpectomy was already done diagnostically, with clear margins, I have decided against a mastectomy. I am concerned about my cardiac health given that it is my left breast. I have read that the brachytherapy is a good option for left breast and for someone who already has implants, which I have (to minimize the damage). I have also read that the abbreviated radiation therapy is now the standard of care for small tumors with no lymph node involvement for women 50+ (I am 49). I also have read that proton therapy is better for cardiac and lung health. I'm so confused and I will be getting a second opinion. I was never seen by a medical oncologist. Only a radiologist, surgeon, and radiology oncologist. I was seen at an extremely reputable cancer center. Go figure. Oh-I will start taking medications to slow down the estrogen in my body.
Questions:

1-How important is the oncotype score for such a small tumor (stage 1a, grade 2) for a 49 year old woman hormone receptor positive, Her2-

2-Is 6-8 weeks of whole breast radiation my only options? What other options should I look into?

3-Do I need a medical oncologist to help “run the show?”

Thank you!

Stacey

rubyredslippers

All I can say is, do not let a medical oncologist run the show ..

AnnC2019

Did you get genetic testing for BRCA and other breast cancer genes? I thought a cancer team also includes a medical oncologist. The books I read recommend getting a 2nd opinion. Don't get blinded by the reputation of the clinic and follow your gut and get a 2nd opinion,if only for peace of mind.

Ingerp

You won't need a MO if you don't need chemo. I *DO NOT* know about the no-Oncotype-for-small-tumor things, although you probably already know many ER+/PR+/HER2- tumors come in with low Oncotype scores. Most women I know with those tumor features have not had chemo, although they all had Oncotype tests (although I believe all had larger tumors). Others with more knowledge will chime in. My first time around I had 20 sessions of rads (Canadian protocol), and assumed I'd be getting the same the second time around, but I was told that after chemo the skin is more susceptible to damage so they like to do the longer (gentler) version. I'd definitely ask why you can't get the shorter schedule. Re: left side, I did the deep breath hold thing and it wasn't a problem. My MO looked me in the eye (twice) and said, "I will not irradiate your heart." The equipment is so good these days--I wouldn't let that part of it worry you.

redhead403

Hi Stacy,

I have been to RO 2x, today will be my third time. I am being annoying but I want answers. You should have a Medical oncologist. I saw him once and if I want AI's I can go back. I am 69 so my plan will probably be different. My area of IDC was only .45 cm or 45 mm. The Margins were not clear, the Superior margin was not clear, and was told I need radiation.

I was told by my MO that I don't need Chemo and I wasn't going to have an oncotype since the tumor was so small. I have been also dismissed by RO with my questions. I am 8 weeks out from bilateral Mastectomies with skin sparing and nipple sparing direct to implants. I had a 2nd opinion who recommended 3 weeks hypofractionated radiation, but my consult with her was for proton therapy and was told that since I have implants the Proton therapy would cause much more damage to my breast than photon therapy. Had to go through the exercise to understand this therapy and to be honest I still don't get why I need 6 weeks of photon therapy. Hopefully I will understand more today about why I need this much radiation. If you have implants, they can be damaged by the radiation and higher risk of lymphedema and cording. I have currently full range of motion on my cancer affected side. The standards of care would be the NCCN for breast cancer. Hope this helps

Anne2871

Yikes! Thank you for your response.

Anne2871

Thank you for your response. I was offered the prone position, (facing down) to help prevent heart damage. I wonder if the face-up-hold breath technique is better? I think that it depends in the person...I will ask at my second opinion appt. Thank you

Anne2871

Thank you for your response. Yeah I don’t understand the whole proton radiation therapy, but I do know that the facilities are popping up everywhere! I will definitely be careful of my options, given my implants. I already have cording from my sentinel node biopsy. It’s improving with physical therapy, and hopefully will be better for radiation. I wish you luck and please let me know what the doctor says at your next appt. We really have to be advocates for ourselves. I was told to come back in 6 months with invasive breast cancer!!

Cheers

redhead403

Hi Anne2871,

On my 2nd visit I was offered the prone position, RO said when I went in for the Simulation that she wanted to do supine. I was livid. She had was throwing out ideas and didn't even know the grade of my idc and dcis. They did a sim for both positions and she called me on my way home to tell me that the prone position moved my heart into the area of radiation. So am doing supine. I was recommended to see MO. Suggested an AI if I wanted it. I have had a total hyster in October 2019. so, of course I don't want it lol given all the negatives I have seen. Keeping an open mind about it though.

Here is the link to NCCN guidelines for patients https://www.nccn.org/patients/guidelines/content/PDF/breast-invasive-patient.pdf

Luckynumber47

I’m glad you are getting a second opinion. Where I receive my care it’s my MO who prescribes Aromatase Inhibitors or Tamoxifen and follows me for any side effects including bone loss. I see her every 6 months and also receive a thorough chest exam. I’m happy to have this specialist following my care.

gb2115

Don't you need a MO for hormone therapy?

redhead403

I believe so

AliceBastable

Yeah, I've only seen my BS for a few follow-ups, but I see my MO every three months for bloodwork and a physical exam of breasts and clavicle area. She said that once I hit the 2-year mark with no problems, I'll see her just two or three times a year. But even though I had a low stage and grade, she may follow me more closely since I'm kind of a cancer magnet. My PCP also does thorough bloodwork when I see her every three months.

flashlight

redhead403, Thank you for the NCCN guidelines. I hadn't read them before and it would have been helpful to me last year. I had 28 treatments of the face-up-hold breath technique with an linear accelerator machine. I was told this could target and destroy cancer cells in a precise area with minimal exposure to healthy tissue. I was able to hold my breath for just under a minute. Before I had 4-boost they did do a CT scan to check everything. I am hopeful my lungs and heart are fine. I do have some of the other side effects.

I think it is good to have a MO also. Some hospitals want you to rotate through BS, MO, RO. every 4 months. I found that too much so now I see my MO's NP. That has been helpful to me.

redhead403

Sounds like you are about done with treatment and have a good plan. Hope you have a good 2020

ShetlandPony

Hello, Anne. I will contribute my thoughts on your questions:

1-How important is the oncotype score for such a small tumor (stage 1a, grade 2) for a 49 year old woman hormone receptor positive, Her2-

I think Oncotype score is important because it is possible for a small tumor to have an aggressive profile. Oncotype gives us more individualized, personalized medicine than we have when looking only at stage.

2-Is 6-8 weeks of whole breast radiation my only options? What other options should I look into?

There are partial breast radiation options, including clinical trials and proton. So then you have to evaluate your in-breast recurrence risk and your personal heart risk to decide if partial is a good option for you or not. Do you have IDC or ILC? There are more questions about the advisability of partial for ILC. The radiation oncologist is unlikely to discuss options that his/her facility does not provide, so if you are interested in proton, call the nearest facility that does it and ask to see if you are a candidate.

One thing about whole breast radiation is that it will likely include some lymph nodes in the field, which could slightly increase lymphedema risk but could also reduce recurrence risk. So again, it is important to personalize the decision.

3-Do I need a medical oncologist to help "run the show?"

Yes, after you have completed surgery and radiation therapy, the medical oncologist will manage your anti-estrogen medication (tamoxifen or an aromatase inhibitor), keep an eye on your bone strength, and monitor you for any signs of possible recurrence through physical exams and blood tests.

Are you premenopausal or postmenopausal? This ought to have an impact on how aggressively you treat and whether you have any genetic testing. (That age 50 number is a stand-in for menopausal status.)

If a doctor refuses to discuss your questions or involve you in decision-making, you are right to find another doctor if you have that option.

You are doing great, learning about the disease and asking good questions! Good for you.

mitziandbubba

I am also Stage 1A and have an MO. I see her every three months. Your tumor is smaller than mine but it is good that you are getting the oncotype test! I had 21 sessions total which I was told was the accelerated protocol. I am on Tamoxifen with few issues.

I had whole breast radiation in the supine position which avoided my heart and lungs. I did also have 5 boots lying on my back. My tumor was actually in my armpit and the doctor said he wanted to be very careful to avoid my lymph nodes as much as possible.

You are doing all the right things by asking good questions as Shetland Pony mentions. I have learned through this journey to be an advocate for myself and fight for my healthcare. Heck, they were just trying to tell me today as I made my next mammogram appt (the first once since the bad one!) that I wasn't going to have ultrasound. I have dense breasts and I ALWAYS had ultrasound - so now that I had cancer we just don't worry about that anymore?

Anne2871

Thank you so much for your reply. This is all very overwhelming. I am seeing my personal Hem/Onc next week (I have seen him on and off for many years for a clotting disorder). He now works at the Cancer Center where I am getting second opinions. He is going to help me get in with radiology, etc. Does he qualify as a MO? Or do I need a separate appt for that? Good luck with your followup.

MinusTwo

Anne - I don't think a Hem/Onc would be the same as a Med/Onc - but by all means since you know & trust him, ask him what he thinks. Sounds like he's going to recommend an RO and maybe push you up in line but I wouldn't think he's be an expert in prescribing chemo or coordinating all the multiple disciplines.

Anne2871

Thank you for your informative response, ShetlandPony. I should hopefully receive my Oncotype score in 2 weeks...more waiting. ugh. I have IDC, stage 1a, grade 2, clear lymph nodes. I am concerned about lymphedema with whole breast rads, as I am experiencing painful cording under my arm from the sentinel node biopsy. Physical therapy is helping, but its still painful. I'm not officially menopausal (according to the diagnostic criteria), but according to my estrogen levels, I am. I haven't had a period in about 3-4 months. I am wondering if my Hem/onc counts as a MO. Also, I have an endocrinologist for my thyroid. Not sure if I should still see her, or if someone else follows that. This is SO confusing. Thank you for your time and knowledge. I'm so happy to have found this community and look forward to helping others in the future, once I know what I'm talking about.

Anne2871

Thanks! I just looked him up, and he's under the specialty of medical oncology and is board certified in medical oncology. Hmmm. I had no idea. Since starting with him as my hematologist, and seeing him intermittently over the years, he has since moved to the breast cancer oncology dept at our new cancer institute. Maybe he will just punt me to RO, which is fine with me. But at least he will know where I need to go. Additionally, this place offers brachytherapy, proton, and photon. So I can at least explore my options, rather than just being a number. It has been hell getting answers. Thank you again...

Anne2871

Thank you, Ann BRCA negative. Waiting for oncotype score. No other genetic testing, but I'm going to ask for everything when I go to my next appt. Thanks!

redhead403

When going through treatment for breast cancer it's always good to have a familiar face. I picked my breast surgeon because I recovered his patients in the Recovery Room. I am glad I did.

mitziandbubba

Agree with you redhead! My PC is part of a huge medical network and it was great to have so many people that I felt comfortable with working on my medical team. I was at first upset b/c I do not live near a large cancer research facility but I do feel like I had a wonderful team.

Askmissa

My tumor was 3mm and after being cut for pathology, there wasn’t enough for me to get an Oncotype. If you can get one, do it.

edj3

My DX is similar to yours and I do have a full team: MO, RO and BS. I also had radiation (20 treatments, the last 5 were boosts). I asked for a test to better assess future risk of recurrence, and my MO uses MammoPrint, so I had that done. I came back at the high end of low risk so my MO wanted me to take tamoxifen. I did, for three weeks, but I had pretty bad heart rate spikes on my runs (pretty serious runner) about 10 days into it. I no longer take the tamoxifen because of that.

But my MO still follows me, I've seen the BS once since surgery and he's the one who ordered my mammogram of my right breast and ultrasound of my left. Unfortunately the radiation left me with radiation fibrosis on the left side, and the lumpectomy scar still is quite painful. As I told my BS, there's no way the left breast is getting smashed with a mammogram, not happening. So he ordered the ultrasound instead.

Oh--almost forgot. My MO is hem/onc and in fact is the director of the advanced breast cancer department where I go.

Hope that gives you another data point as you navigate through all of this.

Anne2871

Thank you so much for taking the time to respond. I am seeing an MO, and I have a new team at another facility. I grabbed my films, records, and left. Too many problems where I was...didn’t feel comfortable. My MO is also a Hem/Onc, and I have seen him in the past for a blood disorder. He recently moved to a Cancer Facility and practices exclusively breast onc. Wish I knew that before, but Ifeel better about my care. Thanks!!!

Anne2871

Thank you! Just had it ordered!

KIDI919

Anne2871 -- I have a similar dx as you.( except grade 3 which if you read about and also OC agrees doesn't really have much to do with your tx)( stage matters more). ( not that grade 3 is great -- rather be a 1) I am scheduled for 16 radiation tx which I have started this wk. I wanted to say I lay in the prone position, they said this protects the heart. Whether that proves to be true -- guess I'll find out. My Oncotype score was 18. So that's an in between. Luckily my OC has proved to be willing to answer my ? and so far has taken the time to listen to me. My understanding is if you are dx with IDC and DCIS you meet the criteria for the oncotype test.

kksmom3

I did not meet the criteria for an Oncotype test as my IDC was 3.2 mm. I wish I'd have had that test tho! I should be at really low risk of recurrence, but I would feel better knowing for sure!

Badluckbdaygirl

Anne, your timeline and IDC are similar to mine. My surgery was 12/10 except I opted for a BMX. When I went back for my final path report, my BS said he brought up my case somewhere (can't remember) and one of the MOs said she would not order an Oncotype for me. Lucky me, I meet her next week (I delayed two weeks for more recovery) for Tamoxifen. I just turned 46 and am definitely premenopausal. My tumor was 7 mm, grade 1, but after mastectomies found with DCIS/LCIS. I am going to demand an Onco test purely for more knowledge, etc.

I believe my BS said given my tumor size, grade and the fact I am hormone + (er 98%), her -, that Tamoxifen would be my weapon of choice. I'm like if I qualify, then why not test me? I'm BRCA-, I do know that, but my mom and grandmother both had BC.

I'm glad you ordered it.