Barely finished treatment and my cancer has spread

Wow red that is a dramatic story. Perhaps you can add some of your specific history to your signature so we can better understand what you have been through. Since you mention having had ILC, it was probably ER/PR+ so maybe you're taking tamoxifen or an aromatase inhibitor?

Meanwhile, you did it before and, once a treatment plan is in place, you can do it again!

Just sending hugs and some understanding. What you feel was what I felt on first getting a stage 4 diagnosis. Hang in there, and keep in touch with your oncology team, someone there might be able to be a point person for you during the next couple of months. Its very scary to imagine what could be happening, but often once a treatment is chosen, things settle down. I hope you get the information you need soon! There is lots of support for you in the forum for stage 4, so do check that out even though you won't believe you are doing that! So far, I have had almost 5 years but thought at first I only had a few months.

Take the best care of yourself that you can, and ask for help. Warmly, Mame

Stay off Dr. Google - the stats you are going to find are outdated and the science of collecting those is not good.

Also, let's find the link to Bestbirds guide. It is a tremendous resource on our disease and our treatment options. I'll poke around for the link but welcome any friends here to post if if you find it faster.

Bestbird’s guide is pinned at the top of this forum. It is an amazing piece of work.

With your sister having had BC, has anyone suggested genetic counseling? Perhaps there is a known mutation in the family that helped you decide on having the double mastectomy. Or, you elected that procedure because ILC can be difficult to detect. Whatever the case, you made good decisions previously and will do so again

Your parents have been through quite a bit but I’ve always thought we develop resiliency when beset by loss which is inevitable as we age. I’m sure you were a support to them during all those situations so now you can let them return the favor!

ladinred-- I am sorry you are dealing with this, so soon after you treatment ended last summer...oftentimes lobular has spread but it's not been detected at the time of primary diagnosis.

Be sure that your PET scan has a CT component, and let the radiologist reading the scans know that you have lobular MBC and to please look for thickening and stranding, especially in the ovaries/Fallopian tubes/peritoneal regions. Lobular has a much greater propensity than ductal to metastasize early to those areas (and especially to bone--have you had a bone scan???) and when lobular metastasizes it frequently forms thin net/sheets/webs of cells more than the typical lump or mass that ductal cancer forms.

I'm glad to hear that you are having liver biopsy-- it's unusual that lobular spreads early to the liver-- not unheard of, but it's not the common metastatic pattern for lobular. It will be good to know if you have a mixed ductal/lobular cancer, or if your lobular has mutated to ER- or HER2+...(ER- and HER2+ lobular are both more likely to spread to liver and lungs than ER+/HER2- lobular...) The biopsy will be very helpful in determining characteristics. Are you also sending it for genomic sequencing (Foundation One) as well as the more usual histologic analysis that the local pathology department will do?

Please let us know what you find out, and what you decide to dog or your treatment. Weare here to provide support and help answer questions...

Breathe. Try to stay focused on what you know and not let your mind go to crazy places.... It will feel more manageable once you have a treatment plan in place.

Elizabeth

Stop with the self-flagellation! Many doctors do not perform routine blood tests, and won't even consider tumor markers until metastatic disease is diagnosed.

Use your energy to read a little on this site. It may help to educate yourself. There is much that can be done, especially with bone problems. You might benefit from radiation to relieve pain, vertebroplasty and/or IV bisphosphonate therapy to strengthen the spine, estrogen inhibition (depending on the biopsy result), etc.

Since your insurance is so fussy, they could have denied an earlier PET scan which means you can quit thinking that you somehow missed the boat. Instead, call on everyone who asked how they can help and give them jobs. Request some casseroles for your freezer, provide a shopping list to be filled - you don't need to go into crowded stores during the height of the cold and flu season. Then, as suggested above, breathe.

Ladyinred-That totally sucks but many women on this forum have tackled brain mets with either the gamma knife or Whole Brain Radiation. Keep an open mind-brain mets are not necessarily a death sentence. Glad you went out for lunch and drinks-keep on living!