Diagnosed w/ Invasive Lobular Cancer in Breast
Dear BPN Excellent Folks
A recent diagnosis of ILC has left me bereft, and was hoping to find a support group. Also, any suggestions for really great oncologists for post operative treatments, I will be having a second surgery to take a little that was left from the first surgery. Lobular is more difficult to see in imaging, wondering if anyone has had experience with this? Thank you in advance!
Sep 30, 2023
Parent Replies
The Women's Cancer Resource Center has support groups.
https://www.wcrc.org
Also, they have people you can talk to for help researching your cancer.
Reach out to the Women's Cancer Resource Center in Berkeley- they have lots of support groups and other resources. https://www.wcrc.org/
I was diagnosed with breast cancer 6 months ago. Recently finished my active treatment. Will be happy to talk — please feel free to email me. Uretski at gmail.
Dina
No advice, just sending good wishes and healing energy your way. I know anyone reading this feels the same way and I hope you feel the support of your community.
If you’re 45 or under, BAYS (Bay Area young survivors) offers peer led supportive groups and more. WCRC in Berkeley is great for classes (yoga, etc) and support groups that lean older than 45. The Cancer Support Community in Walnut Creek is amazing and serves folks with all types of cancer but has tons of resources, like free counseling and caregiver support groups.
on a personal note, I’ve been where you are and it was such a scary and overwhelming time. My heart goes out to you.
I'm sorry to hear about this. My mom recently dealt with ILC, and I asked if she had anything to share. See her response below:
I also had two surgeries for lobular cancer, followed by radiation. I used Mepitel Dressing for all doses, discussing it before treatment began with my radiation oncologist who was familiar with the product and agreed with NIH studies published that it reduces the severity of skin reactions by up to 92% in some studies. Discuss this with your doctor, but I highly recommend doing this. I covered the entire breast. It will not be covered by your insurance, so the out of pocket cost could be more than $100. I was told it was fine to purchase it on Amazon as the company does not sell directly to consumers. The product did last, as the doctor said, for 3-4 days and had to be replaced regularly but you can shower with it, just not soaking or swimming. I have had some minor skin issues, but way less than expected and the staff were all impressed how well it worked for me. Skin issues make radiation treatment much harder on you, there can be sores, itching, redness, peeling and more based on your treatment. I am very glad I found this information on this as it is not commonly recommended as your insurance will not cover it and it is not the standard of care in the US.
Use unscented products only following your surgery, it was suggested to me to just use CeraVe moisturizing cream, the one with the pump top (Costco had it) and Cetaphil gentle skin cleanser as the skin becomes very sensitive after surgery and radiation. I was told to use the cream 2-3 times a day as a minimum. I was able to see an Oncology dermatologist who has been very helpful in suggesting products, these were the main ones. Post radiation, you need keep the sun off your radiated area for three months, the sun really bothers your skin after treatment, I get very itchy and even hives if I forget and am out in the sun with a V neck shirt and no sunscreen. Another tip is contact the YMCA for information on their free Livestrong program, offered at certain locations for cancer patients. It is free, lasts 3 months twice a week for 75 minutes and you have personal trainers, specifically trained for the program working with you to help you get your strength back and ease you back into movement. I started during radiation, signed off by the doctor who felt keeping range of motion and activity was important and felt it was a wonderful program.