Son Seeking Information

johnnywoo1992

Hello everyone,

My mother has breast cancer and I am looking for more information that perhaps people have learned from experienced or is knowledgeable in oncology and the treatment of breast cancer.

To preface, I am coming to here because my parent's keep information for me even when I try to respectfully pry updates from them. I understand they don't want to always be straightforward with me because they want to protect me, such as not telling me my mom's diagnosis until 2 months after. But at the same time, its very stressful not entirely sure what is going on or what the next step is, while finding answers on the internet have been difficult for me.

I understand every single one patient is different and respond differently from chemo, but I am trying to understand whats the next step/stage/treatment and prognosis from what I know of as my mom's current condition.

She's a 50 y.o female diagnosed with breast cancer in September. I believe the doctors were challenged with her particular case and ran a genetic test to which she tested negative (also no family history of cancer on her side until recent this month where my uncle was diagnosed with lung cancer). They also did a biopsy and i believe the cancer was hormone-negative. She had a mass in her breast and a low number of lymphs had cancer and a scan did not detect cancer anywhere else in the body (so is that between Stage II and III?).

Her treatment involved a partial mastectomy and and lumpectomy. If i remember right, they found masses both in her L and R side but only one of the sides had lymph involvement. I was told the prognosis was good by my parents (who said the doctors said that as well), and so they did a lower amount of chemo (I do not know if it actually is lower than the standard amount) that I believe was 4 different chemo sessions?

I learned from her today today what I could and she said at the checkup the doctors said the imaging was "cloudy" and that she will have a complete mastectomy done. She was telling me that they won't be doing radiation if they do a complete mastectomy. Is that the standard treatment of care? Also, I asked and did not receive a completely clear answer but it seems that she did not respond to the chemotherapy then?

Again, I understand everyone is different and I provided as much information as I know from my parents but I was hoping the community here would give me more insight and lay me the cold truth from whatever they know or could possibly relate the experience. Is this a poor prognosis now? What are my mom's next step in care given this information? I find it hard to tether between the unknown and trying to understand that my mom has a good prognosis and will make it through to, and I pray not, she as a very poor prognosis and I should start preparing myself for what may happen with a poor prognosis.

Thank you everyone for any insight you have.

ElaineTherese

Hi!

It's hard to judge your Mom's case, since your grasp of the details of her cancer and treatment plan is a bit shaky. I will say this: early stage breast cancer is highly treatable. In five years after diagnosis, over 90% of women diagnosed with Stage I and Stage II cancer are still alive. Compare that to other variants of cancer like lung or pancreatic. My uncle was diagnosed with operable pancreatic cancer, Stage II. He has a 50% chance of being here in five years.

Yes, some women skip radiation if they get a mastectomy. Maybe your Mom's surgeon didn't get "clean margins" during the lumpectomies, and that's why she's getting further surgery. Best wishes! If you get more details, we could probably help more.

Colt45

The pathology report for your mom would help to clear up some questions about what the next step(s) for treatment are.

Sometimes a doctor will try a lumpectomy and then decide a mastectomy is needed to get clean margins. (Clean margins suggest that the surgery excised the tumor fully.). Whatever surgery achieves clean margins is good.

The size of the tumor and the number of lymph nodes involved will influence the treatment(s). Perhaps chemo. Perhaps radiation. Perhaps both.

Whether the tumor is hormone receptor positive or not and/ or Her2 + or not will influence adjuvant treatment recommendations.

It is viewed as favorable if your're BRCA negative, if that's what you mean by the genetic test.

My advice is to stay positive and get some more information about your mom's pathology. I know this is a very difficult time for a loved one/ caregiver.

Support mom through treatment the best way you can. It takes a special young man and a loving son to seek out answers to help out mom.

As Elaine said, we could probably help more with more specifics about your mom's diagnosis.

God bless

Juls4

I know where you're coming from about not getting information from your parents. When I was in high school, my mother thought she had lung cancer and didn't tell me for weeks (turned out it was an incorrect diagnosis). I knew something was really wrong so I assumed cancer anyway and was worried sick with no one to talk about it with. I know it can be really hard to get someone to communicate honestly with you when they feel they need to protect you, but maybe you could tell her that if the roles were reversed, wouldn't she want you to share the details with her so she could help support you through everything? Support should go both ways. What's the good in you worrying withouth knowing when having information will actually make you worry less?

I had a mastectomy for stage 2 breast cancer and I didn't need radiation, but that was only because my lymph nodes were clear. My doctors had planned to do radiation if even one of my lymph nodes was positive for cancer, so I would try to talk to your mom about that if you can. Is it possible she had radiation after her lumpectomy? That's pretty standard. I worked with 2 cancer centers and they both agreed that positive lymph nodes meant radiation was needed, regardless of whether I had a lumpectomy or mastectomy. Genetic screening is common because the BRCA mutation affects the chances of developing a second cancer or ovarian cancer. It's great if she's negative, but even if she was positive, it would just mean extra screening in the future. When they test the cancer for being hormone positive or negative, they also check for the HER2 protein. Any idea if she was positive? Being positive for hormone receptors or HER2 means the cancer can be targeted by medications other than just chemo. I was triple negative (negative for hormone receptors and HER2) though and I still had an excellent outcome. Each type of breast cancer has its pros and cons.

Her imaging being cloudy sounds like she had a mammagram or breast MRI and the doctors may not be able to tell if they got all the cancer during the last surgery. Removing the rest of the breast might just be a precaution. It doesn't necessarily mean the chemo failed. Chemo is NOT meant to destroy the tumor. Tumors can be shrunk by chemo, but they are too big to be eradicated by chemo. Surgery removes the tumor and the point of chemo is to destroy any microscopic amounts of cancer that may have spread outside of the breast. Cancer that small can't be detected on scans and it's important that they kill it because by the time it's detectable in any other part of the body it's Stage 4. If they didn't give her much chemo, the doctors probably don't think it's likely the cancer spread. As for her getting a "lower amount", the amount they give you at one time is determined by weight, not by your cancer stage or type. Having a lower amount of chemo would just mean a shorter duration (maybe 4 doses instead of 8, something like that).AC and Taxol are very commonly used for breast cancer. I was stage 2 and I received 4 doses of each drug over 4 months. Good luck and try to explain to her that by keeping information from you she's making it more difficult for you, not less difficult. Sometimes people with cancer feel guilty dumping their stress on loved ones, but they forget that it makes us feel good to know that we can help them.

dlb823

Johnny, I'm sorry about your Mother's bc diagnosis. Without reading through each of the other responses you've gotten, I'm going to read between the lines a bit in what you've been able to tell us and give you some additional thoughts that might ease your mind. Of course, without knowing your Mother's actual diagnosis (dx) and treatment (tx) to date, my thoughts may not be totally on target, but I hope they'll ease your mind.

Re. the chemo. I'm going to guess that your Mother may have had 4 doses of TC vs. 6 doses that is sometimes given. The 4 vs. 6 is a judgement call and may indicate a slightly lower level of concern. TC is a very powerful chemo (as are others), and giving her 4 doses of it or any other option should be just as effective, while minimizing potential long term damage. And chemo prior to surgery, which is sounds like she had, is the correct sequence with hormone negative bc.

Also, if she is hormone negative, that would mean she would derive no benefit from the estrogen blocking drugs -- either Tamoxifen or an aromatase inhibitor -- that are given to women who are hormone positive (ER+) as a 5-year follow up to their "active" treatment, and would be additional supporting factors for the chemo and mastectomy.

The one thing I would like to see questioned further is the "cloudy" assessment -- just because I am not personally comfortable with such a vague word when it means a recommendation for a mastectomy (mx). It would be interesting to know if an MRI was done, not just a mammogram. However, it's likely the recommendation for a mx or bi-lateral mx would still be there if her surgeon feels it's the prudent choice -- especially in view of her hormone negative status and possible desire to avoid radiation. And yes, radiation is the standard of care with a lumpectomy, and barring certain exceptions, it is not usually needed with a mx.

Try not to worry too much about stage. Everything up to and including Stage IIIB is considered early stage, and there are many women dx'd at Stage IIIC who are totally cancer free forever after their tx.

I think once we have bc, it's very normal to be waiting for the other shoe to drop, as it seems to be now with the recommendation for additional surgery. But that should get better for your Mother and the whole family once she is finally done with tx and you all can start to look towards the future.

Happy to answer any other questions or chat with you via PMs. As a Mom of young adult children, I think it's absolutely wonderful that you are here asking questions and supporting your Mother. Deanna

Connie1230

I'm not going to guess what the medical situation is. I'm addressing the issue of your Mom not being completely open and honest with you. I have 3 grown sons who live in 3 different states from us. They each made us promise to be open about this so they felt informed and knew just what they did and didn't need to worry about. I think you need to sit down with your parent and have a conversation. If you're completely informed, you are not off on a tangent worrying about things that there are no need to worry about at this time. This is also a good way to be certain that your Mom understands exactly what is going on. I'm a reasonably intelligent 67 yr old and so much info is given to you in a short period of time about a subject that most of us have little prior knowledge about. If your Dad or someone else is going into appts. with her, chances are good that's she's picking up things from them that she may have missed or be uncertain about. When we first met with the surgeon, my dil who's is an ER nurse flew in with her list of questions that we hadn't even thought about and was a great help. I feel the same as a previous poster; if it were you with a serious illness, she would want and expect to know it all