Just diagnosed

Lg2213

Hi,

My name is Lisa. I went for my annual mammogram in November. Was called back for additional imaging. I do have dense breast so I get a mammogram and ultrasound. Radiologist wanted to see me. He noticed something suspicious at 10 o'clock on left breast. Went to go see my gyno that evening for a better understanding. This was a Friday. By Tuesday I'm sitting in The breast surgeon office. She looked at the films and told me they look worrisome. Sent for a biopsy later that day. The biopsy results came back as inconclusive. She recommended a lumpectomy to remove. Pathology came back as invasive lobular carcinoma (cancer). Biopsy did not confirm cancer so she did not remove the lymph node. I am going in on Friday for Sentinel node biopsy.

I am so confused on what to do. She says if my nodes are clear I can either have a mastectomy or go through the seven weeks of radiation. If you know are not clear chemo would be involved. I'm really not sure about how the side effects of radiation would effect me so I am at a state of confusion and I'm trying to make the best decision. I am a worrier and would worry every four or five months that when I go for a test that the cancer would be back. I did take the BRCA test but results are not in yet. Just not sure what the odds are of this going to the other breast.

I guess I'm looking for a some of your opinions as to why you did or did not go with the radiation and went with a mastecomy.

Thanks for listening. I am 48 and have three children ages 15, 14, 12.

Lisa

Icietla

(((Hugs)))

Welcome, Lisa, and my sincere condolences. A breast cancer diagnosis is always a terrible shock. You will feel much better when you know and start on your treatment plan.

There is much to consider in making the choice between surgery types. Each person is unique and has his or her own considerations weighing in the decision. The right choice is the one you make for yourself.

In some circumstances, even after mastectomy, radiation may be advisable.

Breast reconstruction after mastectomy is much more complicated than putting in some implants. There can be no assurance that reconstruction efforts will be successful. Many mastectomees have complications that necessarily delay or prevent their having breast reconstruction.

You are going to hear (and/or read) it stated (or implied) that the big-number statistical studies indicate that the surgery type chosen makes no (appreciable or significant or practical) difference. Those statistical studies generally lump together so many cases of early stages of breast cancer diagnosed within their particular time windows -- whatever types, and whatever ages at diagnosis. Each patient is a person, not a mere statistic, not some fungible unit. Each has his/her own particular cancer type, tumor characteristics, tumor configuration and positioning, disease state, maybe more ongoing or upcoming health concerns, personal circumstances, and other personal concerns unique to him/her. Also keep mindful that (differences in) overall survival rates are to be distinguished from (differences in) recurrence rates, and survival rates are also to be distinguished from disease-free survival rates.

Here are some pages you may find helpful__

http://www.breastcancer.org/treatment/surgery/mast_vs_lump

http://www.breastcancer.org/research-news/best-surgery-for-early-stage-may-depend-on-age

See Beesie's post here__

https://community.breastcancer.org/forum/91/topics/849193?page=1#post_4828669

In the ILC Forum section of this website, you will find many discussion threads from which you can learn a great deal about ILC, including characteristics that you may want to take into account in your deciding on surgery. ILC is more likely than IDC to occur in both breasts, and it has been known to be capable of hiding from mammography, ultrasound, and even MRI imaging. This is not to influence you – only to inform you. Take the time to read through at least some of the longest ILC subject matter threads, such as these __

https://community.breastcancer.org/forum/71/topics/747515?page=1

https://community.breastcancer.org/forum/71/topics/835060?page=1

https://community.breastcancer.org/forum/71/topics/826786?page=1

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More to consider__

https://community.breastcancer.org/forum/113/topics/820712?page=1

https://community.breastcancer.org/forum/113/topics/805330?page=1

https://community.breastcancer.org/forum/113/topics/844617?page=1

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Sep 1, 2017 01:20PM - edited Sep 1, 2017 01:31PM by Icietla

Another ILC-er here. By my calculations, the little-to-no-statistical-difference-in-outcomes so often used to argue against our mastectomy and CPM choices is roughly 93% weighted by IDC and DCIS cases. Somebody tell me if I am wrong about that, huh?

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"Bilateral involvement is reported to be 20–29% in lobular carcinoma [10, 12, 16, 41, 42]. In our dataset the incidence of contralateral breast cancer in women with ILC was nearly double that in women with IDC."

Source: https://breast-cancer-research.biomedcentral.com/articles/10.1186/bcr767

Georgia1

Hi Lisa and I'm sorry you are going through this; the early days are the worst. If you have your pathology report, would you mind sharing tumor size and ER status? You may also want to ask for an MRI, since ILC does have a slightly higher tendency to show up in both breasts, as alcietla points out.

I had two tumors close together in one breast; one was ILC and one was mixed IDC/ILC. Because both were small and strongly ER + (90 percent), and the MRI and US showed nothing on the other side, both breast cancer centers I consulted recommended lumpectomy + radiation + Tamoxifen. In the immortal words of my MO, "Tamoxifen and AIs kick butt," and I am very comfortable with my choice. I had no side effects from radiation except a very small patch of itchy skin.

Sending good wishes your way.

chronicpain

Welcome, Lisa, sorry you are here. In addition to all the excellent links provided by Icetlia for you, I will just add that unless you have already seen a medical oncologist (as opposed to just the breast surgeon and radiologists) I suggest you see one ASAP to help you coordinate the dizzying area of options for you, as an individual, custom tailored, taking everything in your medical historyinto account including your tendency to worry.

Meanwhile, consider securing some anxiety control medications from your primary care doctor, if no contraindications.

Lg2213

Thanyou all for your kind words and support. Pathology says dimension is 1.1x.5 cm grade 2. Estrogen and progesterone receptor is positive strong 95%, Her-2 0 negative. Not sure what this all means. Going on Friday for Sentnel node biopsy/ removal. Praying nothing is there. Then I will go from there.

Did any of you ladies get second opinions after you saw oncologist? I will ask my surgeon on Friday when I should go to them.

I'm so glad there is a great support system here xo

Lisa

Icietla

Well ahead of your lymph node surgery, ask (and remind) your Surgeon and the Radiology Department and other Hospital personnel to do whatever they can properly and practicably do to make the tracer injection procedure tolerable for you.

Depending on the findings as to your lymph node/s, an OncotypeDx genomic assay may be ordered on the tumor tissue removed in your lumpectomy surgery. The OncotypeDx report can be helpful in making the decision about Chemotherapy.

I did not meet with my Oncologist until after my OncotypeDx Report had been issued. Chemotherapy was not advised for my case. I have since been on a once-daily pill, an Aromatase Inhibitor. It has been easy treatment for me. I did not seek a second opinion. I knew from my learning here at BCO that my recommended treatment was by NCCN treatment guidelines.

You are in for another long time of waiting and wondering until your next Pathology Report is issued. I am so sorry I cannot make it any easier for you. Best to keep yourself busy doing things you love or like to do, those things that make time seem to pass more quickly for you. If you need help about anxiety or trouble sleeping, ask your Doctor for medicine to help about that.

You will get through this.

We are here for you.

Anonymous

Here is some good news, Lisa...I was dx with ILC as well. You are strongly ER/PR + meaning you can take an anti-hormonal pill to prevent further recurrence. As well, grade 2 is better than grade 3, which is most aggressive. You are HER2 neg which is what you want to hear.

I did chemo, radiation, and bmx followed immediately (same surgery) by implants. It was a one-time surgery and was uneventful. I don't think I even had any pain! Chemo wasn't a walk in the park, but I worked throughout, and got through it--only felt bad a few days after each infusion and I had dose-dense chemo, meaning I got it every other week instead of every three weeks.

Rads were easy. 15 min each session only! Since chemo infusions were some hours each time, rads was incredibly doable--just a few minutes. I had some redness but the radiation oncology nurses gave me some really great stuff to put on my skin and once I stopped rads, the redness healed.

I did chemo because I had positive nodes (see my status below).

I am anxious (a worrier: I understand!) every single time I go to my 6 month checkup. I have to take Xanax before I go. It helps. I don't try to tough out those visits. Sometimes I get through them more gracefully than others, but I have developed PTSD as a result of the cancer dx, and I know what to do to treat that, too. Most of us do have some kind of leftover feelings post dx and treatment; it's normal and we help each other with those feelings through these discussion boards.

Finally: ILC has a tendency to be multi-focal , meaning grows in both breasts sometimes, unlike IDC. It also grows in a different pattern and is harder to detect with scans like mammos. Because I had dense breasts and 5 yearly mammos didn't pick up the tumor making me feel falsely secure, I opted to get rid of all that dangerous breast tissue via BMX so I wouldn't have to hyperventilate about scans after that. I had one MRI earlier this year to see if any tissue was left or if there were any problems. The MRI was clear.

You'll be a veteran like we are before long. Drop in at the ILC site, it's fairly active, and a lot of us there have a lot of knowledge about treatment, etc. There is also a thread called "longtime ILC survivors" that can give you hope.

Hugs and hope to see you on the ILC board!