Diagnosed with DCIS, but haven’t heard that in months.

[Ldonovan481]

the medical community breast cancer

[NPmary]

I just read your Bio. Sounds like you're having such a tough time. Did you have a biopsy and was diagnosed DCIS? Have you had staging done? It's really hard, use your research skills to your advantage. Use your insurance to your advantage get second opinions - find a facebook group or others on this site who can recommend people they are comfortable with. If you go the medical route learn all you can, have a doctor who you trust delivers quality standard of care and who your gut can trust. You can go medical + alternative methods of care - again it's quite alot of research, there may be a naturopathy doc who can work well with an oncologist or you may have to do all of the coordinating yourself. If you choose this route you wouldn't want to take medication and then take supplements which will undo effectiiveness/increase or decrease absorption or otherwise cause harm. Just because something is alternative doesn't mean it's safe - the downside is research is often lacking, or skewed. I wish you peace in finding caregivers who are compassionate and wise listeners and deliver care you deserve.

Let us know how it goes (l live in Ohio).

[PJBinMI]

I agree with NPMary that finding a good oncologist that you trust is important. Since you are in NJ, could you go to Memorial Sloan Kettering in NYC? It's one of the top cancer treatment centers in the US. They have bc specialist oncs. It is true that each of us responds in very indiidual ways to treatment, but there are alot of commonalities and treatment is generally recommended based on the characteristics of the cancer cells, plus size and location of cancerous lesions. Predictions for us as individuals are just not 100% accurate. Some of us do extremely well. I hope you can find a treatment team that you have confidence in. (If NYC isn't a great idea for you, the website ofo the National Cancer Institute lists all the "Comprehensive Cancer Centers" in the US. Those are the best cancer centers, are affiliated with medical schools, and their bc oncs are the ones who give presentations at top bc and cancer conferences.)

[AvidBooklover]

I live in NJ. I go to MSK in Basking Ridge. There also are offices in Middletown and Montvale. I highly recommend them. I have been treated for various cancers...breast, MBC, melanoma and thyroid and in each instance have received excellent care. Definitely reach out to them.

[Ldonovan481 in reply to AvidBooklover]

Please tell me what MSK stands for. There are so many abbreviations on this page, I have trouble figuring them out! Thank you! Yes, I know now I should have gone to a cancer center, even tho I didn’t think my BC was that urgent.

[AvidBooklover in reply to Ldonovan481]

Sorry, Memorial Sloan Kettering Cancer Center. Main hospital in NY but many satellite office. I go in Basking Ridge, NJ.

[Adamskd1]

Hi there, I can only imagine your frustration right now. I am sending you a link to SHARE Cancer Support where you can call our helpline to speak to a well trained - surviving volunteer that may be able to help you figure things out.

SHARE sharecancersupport.org/

National Helpline: 844-275-7427

[ba5083]

I agree with many here. Find a good Oncologist. It might take several opinions to find the one you are most comfortable. Many times Onc will make things sound great and rosy (course it would be tough dealing with people with this disease as a profession), try to find one that gives accurate information. In the early stages find out as much as you can about your cancer. ER/PR status, HER2 status, Ki-67, Oncotype score, CA numbers from blood draws and other subtypes under DCIS (I'm dealing with lobular so not as familiar with DCIS). It might help to start a daily journal particularly once you get into treatments. If you are looking for alternative options I would recommend reading "How to Starve Cancer". There is some great info in the book and many testimonials that have followed the plan for all cancers including MBC that are NED and have been for a long time. Care Oncology Clinic is a possible option (I'm sure there are others) that will work with traditional treatments. They use off label or repurposed drugs to block cancer feeding pathways. They do regular blood test as well along with checking inflammation levels, waist size etc. Bottom line is you are your best advocate and knowledge is power. Please remember this is a great forum and almost every treatment and internal feelings you have many if not all on this forum have been through so don't be shy to ask questions or just vent.