Support Groups for Family of Cancer Patients

Parent Q&A

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  • 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!

    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.

  • Hello, my 2-1/2 year old is expressing sadness about his mom's cancer treatment. It especially happens at night. We thought it would get better following her surgery, but he continues to express sadness. It's possible it will go away with time, but I did want to check in with a therapist, to see if there are other concerns he has that I am not understanding, or if there is anything we can do to assuage his sadness.

    Does anyone know of a therapist in the Oakland / Berkeley / Alameda area, that works with 2-1/2 year olds?

    Even better is if they are in the UnitedHealthcare network.

    Thanks!

    -Dan

    Griselda Oliver Bucio is fantastic. She is highly trained in early childhood trauma and has been part of the UCSF child trauma program. She has a private practice in Walnut Creek which may be far but I would consider it - she’s that good.

    Contact the Women’s Cancer Resource Center for referrals. There are some free/low-cost support services for families where the parent has cancer. 

    You should reach out to Haley Pollack who runs Bright Spot Network - specifically targeting young families affected by cancer with kids under 6yrs old. She is also based in the Bay Area and has tons of resources even though the org is international.

    https://www.brightspotnetwork.org/resources

    Haley Pollack contact [at] operationohana.org>

Archived Q&A and Reviews


Questions

Cancer caregiver support group

August 2008

My spouse just received a cancer diagnosis. The hospital has already provided referrals to support groups for him, but I'm hoping to find some referrals to support groups for caregivers for me. My preference is online - easier to participate in as a parent of a toddler, but in-person is ok too. Ideally, I'd really love a support group designed specifically for parents of young children, since there are issues unique to that population, but groups geared towards spouses as caregivers/young caregivers (age 40 and under) would be fine too. I've already submitted inquiries to Women's Cancer Resource Center in Oakland and Stanford, Family Caregivers Alliance/caregivers.org, and cancercare, but was hoping some of the folks on BPN might know of other yahoogroups or things like that. Getting my ducks in a row


I'm so sorry about your spouse. My thoughts are with you and your family. I know from experience this is not easy. I live in Lamorinda and found The Wellness Community in Walnut Creek to be fantastic for care-givers. It helped to meet others in-person who were experiencing or had experienced what we were.. And, they were so uplifting and inspiring! http://www.twc-bayarea.org/. Also, from what I understand, Alta Bates offers great support services too. I didn't use the online route because the ones that I stumbled upon were sometimes too depressing. I liked the in-person groups facilitated by a counselor. Good luck to you. been there

 


Caregiver for sister with cancer - support?

Nov 2007

I am the primary family caregiver for my sister who has advanced cancer. I am emotionally, physically and financially fatigued. Are there any caregiver support groups in the East Bay? Thanks. holly


The Family Caregiver Alliance provides services for caregivers, they have support groups, classes, counseling, respite, etc. 800-445-8106 www.caregiver.org


Mom dying of cancer, I need a support group

Oct 2007

Does anyone know of a support group for those with a loved one who may be dying of cancer? I have what is probably an unusual situation, where my mother has an untreated malignant melanoma and does not wish to have any medical care or prognosis (though she was medically diagnosed a few years ago). I have the feeling a downward spiral is beginning, and though I'm past the stage of wishing to change her views about treatment (it may be too late anyway), I am bewildered, to say the least, as I anticipate the future. Does anyone else have an experience like this to share? Thank you so much. anonymous


Best wishes over the coming weeks and months. There's nothing you can really do to prepare for losing your mother. Try to be in the moment with her as much as you can until she goes. Try to write down any meaningful conversations you have as she is dying. My mom said things in those final weeks that are still resonating with me three years later.

Even if your mom doesn't get Hospice care, you might check out your local Hospice center for support groups. Hospice of SF and Hospice of Marin are very good. You might also contact the Women's Cancer Resource Center in Oakland; they are a phenomenal place for information and I think they still actually have support groups for people caring for a loved one with cancer.

And definitely check out Hope Edelman's book, ''Motherless Daughters'' and her latest book ''Motherless Mothers.'' They will break your heart, but they will validate the feelings you may experience of losing your mother. No matter what your relationship has been like with your mom, losing your mother is an extremely significant life event for a woman. Whether you're 6, 16, 26, 46, or 66 - your mother's death is one of the biggest things you will go through and will shape your life in a way that shouldn't be underestimated and can't be fully imagined until it happens.

Best thoughts to you and your family. MLM


You could try contacting your local Hospice organization. They probably know of some good groups. Hospice (in another state) helped my mother die well. I was so gratful for their support. Hospice may be helpful for your mother and the rest of your family, too. Anon Mom and Daughter


Hi, I'm sorry to hear about your mother's cancer that you and she are facing. Here is a link to support groups from the Women's Cancer Resource Center that includes ones for friends and family. http://www.wcrc.org/support.htm (Women's Cancer Resource Center is a GREAT center for many things related to cancer). YOu can also call the American Cancer Society at 1/800-ACS-2345 and they can tell you about any other support groups at local hospitals, etc. Wishing you strength on a difficult journey


There is an East Bay agency called Circle of Care that provides support for people who are dealing with illness or terminal disease. They have support groups for people with disease, family members, and children of parents who are ill. You should be able to find the phone nunber on the web or in the white pages. They are a wonderful organization. Rebecca


Help needed for family of cancer patient

Feb 2007

My co-worker's father has stage 4 terminal brain cancer. She has moved in with her parents to help care for him, as her mother has a full-time daycare in their home with 5 toddlers. They need help in several areas, and I was hoping for suggestions. The first would be a support group for both dad and the family members. Understandibly, they are having a difficult time coping with this illness. Also, her father cannot return to work, and sits in bed all day watching CNN, as he gets confused and cannot drive/leave the house alone. Are there senior centers that pick people up at home for daytime activities? He is 61 or 62, so may qualify for these programs??? Also, he was in charge of family finances, and the family found out he hasn't been paying bills for several months. Is there someone that could help her mother make sense of this?

I think they all feel overwhelmed by what is happening and need some guidance. It would need to be gentle, as her father is a very strong person and is used to being in control. They live in the Concord/Walnut Creek area. They are such a close family, any suggestions are much appreciated!! want to help


When I had cancer, my family and I went to the support groups at Circle of Care , a publicly supported program in Oakland. The phone number is 510-531-7551, they provide support for children and families going through illness or loss. They have support groups for people with illness, caregivers, and children. Good luck to your co-worker and her family. anon


The family lives close to The Wellness Community . Many free services are provided to cancer patients and their families. In addition to support groups, there are educational events, yoga and other stress management classes, art and music events, and individual counseling. Call (925) 933-0107 or go to http://www.twc-bayarea.org. Nancy