Newly diagnosed invasive ductal and lobular in right breast

How are you doing with chemo? I pray that you tolerate it well. Hugs.

Hello again,

Prior to surgery I had a PET scan and MRI with positive results (or so I thought). Everything looked that it had shrunk or was completely gone. After surgery both my oncologist and mastectomy surgeon were taken back as the cancer and the scans did not match. I had 22 of 22 lymph nodes removed - all cancerous. The two small breast tumors also showed cancer. I did a single mastectomy. My follow up with my Oncologist was unnerving he said that my type of cancer (Invasive lobular carcinoma) had a high rate of returning (50-75%). He said the reason was they cannot detect it well. I found this very upsetting - first the confusion between the scans and what was actually there. I asked him if this was going to take me out and he said most likely if it comes back. They said they were going to monitor it closely but if they can't detect it how do we fight it? I am not giving up just finding this very confusing. Has anyone else faced this type of situation? Thank you any and all feedback greatly appreciated. I will start radiation late September or October.

I was just diagnosed with the same cancer, known as IDC-L or mixed breast cancer. Only 5% of us get it. I was initially told I needed both breasts removed although mine was in the same spot as yours on one breast and was over 7 cm. The other breast was cancer free. The second surgeon had a different plan, to go on Anastrozole or another estrogen blocker and try to reduce the size of the cancer. Since there was no cancer in the other breast, nothing was being suggested to do other than to decrease the size of that breast to match the one with the lumpectomy. After 15 months on Anastrozole, one tumor had shrunk to 3.2cm from over 7 cm and the other to .3 cm from 4 cm initially. I just had a successful lumpectomy. A plastic surgeon did the reconstruction of my cancerous breast and plastic surgery on the other to match the size. I have very little scarring and what I have isn't noticeable. My suggestion is to get a second opinion. What was done for me is more commonly done today vs. the double mastectomy that used to be routinely prescribed for tumors of our size. If you have a notable cancer center near you, I suggest that you try there, since they are likely to be up to date and probably conducting research, as well. I'm not taking part in research, but I have one of the better-known research doctors who stays really up to date. Good luck to you!

Initially, it was thought that I had lobular cancer. If you check the research, the rate of return of that cancer is not 50-70%. It is commonly 12% recurrence or less. The testing done on my tumor initially showed that I had a 98-99.5% of cure and less than 4% chance of recurrence. My oncologist told me that my results were not uncommon for lobular. What happens with lobular with a mastectomy is that it may return in your bones, liver or stomach. They don't catch it as quickly because there is no breast tissue for it to return to. That's how my oncologist explained it to me. If you have access to another oncologist, I suggest that you pick their brain regarding recurrence. and what you need to do to stay on top of any potential recurrence. Also, an Oncotype test will tell your oncologist whether chemo will help and if so, how much, as well as your specific rate of recurrence, based on your tissue. Best of luck to you!

I had the same sort of contradiction on percentages of return. One oncologist said guaranteed 82% return if I didn't take Tamoxifen. Next doctor said more like 5% chance to return, 10% max. I do my own research now, and I read this site daily. Lots of information and I see many upbeat successful stories from us real people. There's more unlucky stories than lucky but that goes to reason, and I take that into account. People who didn't have any trouble many times don't go looking for a site like this. It's still a great comfort to me.

Thank you for your reply; it is encouraging. I agree. with you. I have had a very positive experience overall, but I believe that I am part of the treatment team and am responsible to do my part in my recovery. I read a lot of research, do what is suggested and ask questions when I need something explained in depth. I'm fortunate to have top notch treatment from some of the best in the field. I think part of that is that they are open to questions and I have learned to ask them. I, too, find this site a great comfort to me.

I will have my 3rd infusion the end of August. The chemo side effects are horrible and I'm doing what I can to get through them but it's a struggle.

I will be praying for you. It's such a difficult journey for all of us. I ask God each day to give me the stamina and serenity to go through each day. I'm waiting to find out if I go on a chemo pill along with Anastrozole (that I have been on for 16 months). Sending you hugs. You are truly a warrior!!

I’m sorry that you have to endure horrible side effects. Your cancer is aggressive so hopefully the chemo will be more effective. Hang in there and fight with all your might. I’ll be praying for you. Sending you love with big hugs.

My PA told me that anastrozole is very effective in reducing tumor size. She said during the pandemic doctors could not perform surgery so they prescribed anastrozole. If your cancer is high Er+, it will be the best scenario. You’re a true warrior too!