Lobular Breast Cancer: Let's share and support each other

I have just last week had my diagnosis of stage 2 invasive lobular Cancer. Measuring 6mm on MRI. ER positive, Herceptin negative. Ultra sound not detecting a spread to the lymph nodes. I am still waiting for an appointment for MRI and to see the surgeon. As I have transferred my care to closer to home, and a place and people I trust and have worked with before. They have recommended breast conserving surgery followed by radiotherapy, with no chemo.
I am told that as long as the MRI confirms the size and it isn’t anywhere else (being that lobular cancers does not always form in lumps and can hide very well in a monogram)
I am reading that a lot of women have a mastectomy at stage 1, or that within a few years go on to have a mastectomy if having an earlier lumpectomy.
I feel
I have been left wondering scared and without a plan. The way they discussed it with me was that it is good news, easily treated with will have a positive outcome. My head is spinning and I feel like I am a fraud for having a good news (if there is such a thing) regarding the Cancer I have. It has been minimalised by the consultant parting the result to me. He literally told me how lucky I am!
Well I don’t feel lucky, I am terrified, trying to keep it together because my family are in so much emotional distress. I have to be strong for them, and feel that I can not break. I was so relieved to find this group. As I am at the start of my journey.
Any advice you can give me will be appreciated.

Please let us know what the Med Onc recommends.

Thank you so much for your reply. I hate being in the grey area (at least in my mind it's a grey area). I will see what my Med Onc says today and go from there ❤️

"When people ask about MRI and radiation, they typically want to know if MRI produces radiation in the same way that X-ray imaging or CT scans produce radiation. Unlike X-rays and computed topography, MRI scans do not expose the patient to ionizing radiation." “There are no known harmful side-effects associated with temporary exposure to the strong magnetic field used by MRI scanners.”

Hello @timely - honestly, I would push for the MRI. You can always get a second opinion, as well. Reading your post, it doesn’t seem like you are comfortable with the recommendations given by your radiation oncologist, so I’d advocate to have the MRI. There’s a reason why you feel the way you do, so go with your gut and push for the MRI. I wish you all the best!

Hello @lhwoz I had invasive DCIS, which I know is different than ILC, but my oncoscore was 25. I was 54 at the time of diagnosis. With an oncoscore, as with many other types of test scores, there’s usually a range that the actual score might be. My score was 25, but it actually could have been as low as 22 or as high as 28. I don’t remember the standard error of measurement, but my point is, my score might have been higher than what was actually reported. I was 54 at the time deciding whether I should get chemo. My cancer was stage 1 with no lymph node involvement and genetic testing was negative for all cancers tested. My medical oncologist said had I been 50, chemo would definitely be recommended. She also said since I’m 54 and with an oncoscore that might actually be higher than 25, that she recommended chemo. I had 4 rounds of chemo, which I’m glad I did even though it was a scary decision to make, which I don’t regret. It gave me peace of mind knowing I did everything possible to reduce my chances of any cancer remaining. I know this is my story with a different cancer, but that was the decision I made. I hope this gives you a little more information to help you with making a decision whether to have chemo. I wish you well and all the best 💗

This was the Radiation Oncologist who said this. The first time he said his hospital group is advocating mammogram only as the new guidelines and implied that the other groups were wrong and in past. The 2nd time I asked him, he said that most women do not want MRI's. (His hospital group may not do them without a push on my part.)
The other group is doing mammograms + ultrasounds in the same visit. But ultrasounds do nothing and show nothing for LCI.

Timely, Every person's body is a bit different , and I am not a medical doctor. But I would ask (1) do you have an oncologist (in contrast or in addition to a radiation oncologist)? (2) If so, get your oncologist to go to bat for you with the breast MRI-and the 3D diagnostic mammogram. I have never had a problem with Medicare or secondary insurance in getting these covered. Speak up, and if needed shout out. You have nothing to lose and perhaps a lot to gain. (I have had 4 breast MRIs, without any problem, just a bit noisier than a CAT scan. Whoever told you most women do not want to have a breast MRI may not have had the full facts in front of him/her, to be polite. ) --Nancy

Hi Nancy:

I so much appreciate your information.
My last radiation boost therapy is 3-01-2023 which is the last of 6.

As far as prevention/checking afterwards, I seem to have 2 choices:
1) Mammogram once a year only. (That site claims it is their new guidelines.) I have to confirm it is a 3D mammogram myself as ILC will not show up on regular mammogram.

2) Mammogram and ultrasound together once a year.
Radiation Oncologist in 2nd time I asked about 1) site, said that most patients do not want to have an MRI. They do not endorse an MRI. But, ILC shows up with MRI's.
Neither of these sites balance every 6 mo.

3) There may be a 3rd site which I could check yet.

From what I have read, ILC does not show up at all if one just has an ultrasound. It would show nothing...and is not useful for ILC.

****One does need to have a 3D mammogram to see ILC.
I was told that if I had had my mammogram earlier than August 2022, they would have found nothing..Plus, normally, the next mammogram would have been August 2023.

I need some feedback from everyone as I have to make a decision on this on Monday Feb. 27th, 2023 when I see the Radiation Oncologist. He is advocating a once a year Mammogram which would be thus next August 2023 and then next August 2023.
There would be a balance of every 6 months to see either the Radiation Oncologist or Breast Surgeon. They alternate these visits with their nurse pra tioners every other visit.

Hi Timely,
my treatment plan is:
--Breast MRI once a year, alternating with
--Mammogram once a year. It's a Diagnostic Mammo, technically bilateral diagnostic mammo digital with CAD.

So, every 6 months I have some imaging done.

Anti-estrogen: I take immunotherapy medication Arimidex, 1 mg once a day.
My oncologist and my breast surgeon are in charge of keeping track and writing the orders for the scans. I see each of them in their office once a year (alternating every six months) and each performs a breast palpation. Records are on-line so everyone can see what's happening and the results.

I also had genetic testing and counseling after the surgery. The testing is free, the counseling is not. A very good idea, as a gene showed up that was mutant. It affects not only me but potentially my 3 nieces, 1 nephew and numerous first cousins, for breast and prostate cancer. Armed with the official letter from my health care service (Sutter), one of my male first cousins went to his doctor, had the genetic testing, and results showed he also had the mutant form of the gene. Doctors looked further and found prostate cancer.

My thoughts are with you as you undergo your treatments. Although the treatments can be scary, try to focus on the present, on the things you love, and those who love you, and don't worry about the future. --Nancy