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

I have invasive globular #2 two lumpectomys now scheduled for complete mastectomy as cancer is in chest muscle.

I am just ahead of you at just over five weeks out. I started to feel less tired last week - I think I napped three or four days. Following I felt a need to nap just about every day. Grateful I could nap...

my oncologist turned me over to pcp. she said she has not mental health experience and i should take gi cocktail for stomach pain. the meds they gave me for mental pain gave me stomach ache. i am going to try to calm down. i did not do my exercise instead tried to relax before church. i have to calm down cause i start thinking dark thoughts and i don’t like them.

You can consult another oncologist. They vary greatly on opinions. Life is to short to feel depressed and tired

7 years remission, tired and depressed taking meds but they give me stomachache or can’t sleep.
At 5 years i was ned and i asked my oncologist did she think i would be ok but she said oh wound never say that, i don’t want to jinx anything. oncologist quit me back to pcp, they are very busy. i just hate my life, in remission but why can’t i let it go and relax and have a life. thanks im going to exercise now

Thank you so much. I'm 4 weeks out and still have extreme tiredness. I wish this would go away. It feels like I'm dying. You are the first person who has experienced the same. Are you still having the symptoms?

The information you've gotten is right on. The only thing I would add is that the onset of lymphedema is not always early in treatment. Mine was in my breast and underarm. It is exacerbated by flying and cuts or infection in my case, the left arm. Find a good pt/ot specialist and follow the workouts you are given. Wishing you the best

I experienced extreme tiredness as well; and commonly in the afternoon. I am almost five weeks out and am not feeling as tired. I slept, aka napped, when I needed to. Have faith you will recover and be less tired.

Seems to me you do not have both types of cancer; I bet what your diagnosis means that you have IDC but the growths within your ducts are starting to move toward your lobules (glandular tissue). I would contact your provides and ask if the above is true... Good luck in your journey!

Hello again ccc1965:
Yes! I can use my affected arm. I have stage 4 breast cancer (invasive lobular carcinoma, triple negative), mets to lungs, retroperitoneum, contralateral breast and lymphatic system.

I am 71 years old and ride my horse several times a week. "Riding" included grooming, putting on her saddle. etc. I do all of the normal things around the house--emptying the dishwasher, making the bed, laundry, taking out the trash and so on. Although there is some info that warns against using the affected arm for anything very heavy, my experience was to use the arm. I am careful not to get cuts on the affected arm, eg) wear gloves while gardening, etc. to avoid possible infection. But I use the arm, not too much at first and did not overdo it after surgery and radiation. After surgery and radiation, it was a while until I could do a lot of things. I had physical therapy for about 10 sessions after the mastectomy. The arm is not quite normal strength, but works works pretty well. More of my arm use issues are due to the mastectomy and radiation, and less due to the lymphedema.

One of the hassles of lymphedema is wearing the compression garment. However, I wear it every day, all day. I believe that wearing the compression sleeve every day has helped prevent the lymphedema from getting worse. Another downside is how it looks--like an ace bandage--and that clothes do not slide over it well. (Apparently these is no type of compression sleeve that is slick/smooth!) Another issue is that the upper arm is bigger so some blouses do not fit over the upper arm. While annoying, this is not a major hurdle. You can try different styles of tops or take a blouse to a seamstress/dry cleaner to see if the sleeve can be adjusted.

Again I urge you to contact your surgeon or nurse immediately if you think that lymphedema is starting.

Please let me wish you the very best and I hope all goes well for you!