At a Loss

Hi, I was diagnosed with Invasive Lobular Carcinoma of my right breast early this year. My tumour was 3.5cm and I had a lumpectomy, fortunately my lymph nodes were clear. I didn't have chemo but did have radiotherapy and I am now on Femara for 5 years and Zoladex injections monthly to put me into menopause as my tumour was ER/PR+ and HER2-. I live in New Zealand and all our medical treatments are free. I am happy to help if you have any questions.

One of my tumors was ILC at 1 cm, I understand that in general ILC is slower to leave the breast than IDC.

I had one ILC and one IDC each 1 cm, 2 separate occurances. The mastectomy and DIEP were amazingly easy for me. I had very little pain and mild discomfort. I chose no chemo even though my oncodx score was 34. I am on hormone therapy which is not particularly easy. Aches and pains, fatigue and skin irratations. But it fairly mild.

Tell you sister that I almost forget I have cancer now. I am happy I had the surgeries. I look and feel pretty good.

My doctors told me I was borderline for having a masectomy, but as I have big boobs 36DD I could get away with it. I wanted to give my boob one chance and if I get anything else happening I will go for a masectomy. The results are really good, just one boob slightly bigger than the other which is no big deal. I've read that as Lobular tumours are bigger because of the late detection they used to encourage masectomy, now however it's turned around a bit and they think lumpectomys have the same outcome as masectomys. But I believe it's totally a personal choice. Some people just want to have them off to reduce the risk or any future re-occurrences. I think the worst thing about the surgery for me was removal of the lymph nodes, that was far more painful than the actual lumpectomy, but a necessary evil to see if the disease has spread. I do feel for your sister having been through the horrible cancer journey with two husbands. Just doesn't seem fair!

Hi Creidance. Im so sorry about your sister. I just wanted to tell you that I had to have several scans to rule out mets before deciding on what surgery was suggested. Im not sure if your sister knows that it isn't anywhere else but they don't always do surgery if it is already spread.  I had a bilat mastectomy 2 years ago today. Then I did 6 months of chemo and 3 months of radiation. I ended up having 5 surgeries in the last 2 years and it is doable but if I knew then what I know now I might would have also chosen to not do all of that. Im glad I did it but it is a long tedious process. I can totally see where your sister is coming from. I had to decide to do this for other people and not just myself. Maybe she just needs to hear the reality from you how much you want her here for as long as she can be. Maybe she is depressed. 2 husbands with cancer is a lot to deal with emotionally. I wish both of you the best.

Creidance, I think a lot of people are confused about cancer stages and make erroneous conclusions because of that.

Typically when people talk about a relative who "died from treatment" or wasn't helped by treatment etc., it was a situation where the patient was stage 4 already. Sometimes treatment can do wonders even at stage 4, but other times not so much.

Thing is that if you are "only" stage 3, you still have a really good chance of treatment "working." By working I mean that you have a good chance of being cancer-free after treatment and staying that way for a good long time. 

I too had a husband who died from cancer in 1996; I was dx with ILC and +nodes in Sept '11.  

I was his primary caregiver and was terrified, thinking back, on what he went through. Thing is, I had to do a lot of research and understand that BC is so much different that oral cancer, which is what he died from.  And that took time. When I realized my chances, tx, and options for preventing recurrence were so different from Bill's I was able to move forward. As well, 15 years had passed from his tx to mine, and tx is so much different from then till now overall for cancer.  

However, I still refused to go to my local cancer center for tx, where he got his, and opted to drive 45" one way to Sedona.  Nice drive, and my breast cancer oncologist is one of the best in the state.  So I still had to deal with the memories and talk a lot about them to my now-husband who was my rock.  

I get her fears, but I realized that not to do anything was giving up, and I'm not a quitter--and neither was my late husband. I felt like to give up would be to dishonor his fight, because he lived fully and tried everything right up to the end. IMHO, only.

It's still new, and if she's got a small tumor and no nodes involved, she might not need anything more than surgery and an anti-hormonal.

Claire

If your sister would consider taking an oral medication, ask her doctors about the possibility of neoadjuvant (before surgery) endocrine therapy (ILC is almost always hormone receptor positive) to try to shrink the tumor.  Because she is over 60, I assume she's post-menopausal and could possibly take a medication called an aromatase inhibitor.  AI's are powerful drugs and while they don't always work for everyone, it might be an effective and less traumatic way to start a treatment plan for your sister.  I wish you all the best.