Supportive Cancer Charity in the USA?

[Lindaura]

Hi all,

I have had wonderful support from the MacMillan cancer charity here in England during my treatment, from providing extensive information about everything cancer, help in purchasing and fitting an attractive wig, to help with applying for benefits.

Now my sister has been struck with breast cancer in the USA and she could also use this kind of support.

She lives in Marina del Rey, California, which is next to Venice Beach and Santa Monica, and she is being treated at UCLA, which has a clinic in Santa Monica, but the system there, with Insurance forms for everything, is terribly cumbersome and in her fragile state of mind, she would really benefit from a support worker.

Is there anything like MacMillan in California?

Thanks for your help,

Laura

[Nancy222]

So sorry to hear about your sister. I'm in Canada so I'm no help at all.

Are you getting checked for breast cancer?

[Lindaura in reply to Nancy222]

Hi Nancy, feel totally irradiated from my own Chemo, which is the same as hers, so feel pretty cancer free, but have mammogram set for late April. Waiting for her BRCA test results and I haven't had the test yet.

Thanks,

Laura

[Nancy222 in reply to Lindaura]

Ah, okay. Glad you've got the mammogram scheduled.

I'm in a high risk breast cancer program (mammogram and MRI scheduled every year). I did the gene testing (21 genes) and nothing came up. The doctor said that likely haven't discovered the gene that's in my family. We have lots of cancers.

I hope your sister finds supports. Seems to me the breast cancer folk are very active and helpful... There might be some info on the hospital's internet site.

[Tesla_7US]

Lindaura, I'm not sure but I think maybe the American Cancer Society might be of help.

[Lindaura in reply to Tesla_7US]

Thanks, Tess,

I will see if they have boots on the ground there.

Kind regards,

Laura

[Sunfleury-UK]

There is a community on HU called Share... they support both Ovarian and Breast Cancer and are based in the USA. Im sure if you join and post there, you'll get loads of great suggestions (probably State specific as well) Sx

[grammeejill in reply to Sunfleury-UK]

I am in South Carolina and really need to research this myself. The infusion center at Roper St. Francis Hospital here has a help line but I think it's for treatment questions. My oncologist is not a talker so everything I have found out about my disease is from my own research.

It is a great idea to contact the American Cancer Society. She probably needs a good support person she can ask questions of face to face but I love these ladies and carers and allowed of this group. Even if they are across the pond. Hugs and keep us up on what you find for your Mom

[Sunfleury-UK in reply to grammeejill]

There are three Share forums here on HealthUnlocked, focussing on: Ovarian cancer, Breast Cancer and Metastatic Breast Cancer. As they are US based, I think its worth mentioning as I know there are a lot of members of this forum who may not be aware of this. It may be especially pertinent given the different ways the health systems etc work and worth joining as well as MyOvacome.

FWIW, whilst I'm mentioning this, other HU forums supporting those with Ovarian Cancer are Ovacare (Ireland) and Ask Eve (all gyny cancers so includes OvCa).

[Lindaura in reply to Sunfleury-UK]

Thanks,

I didn't grock (understand in a profound way) what this Health Unlocked was all about.

I love Ovacome, but will check out the others on behalf of my sister.

X

[Lindaura in reply to grammeejill]

This site has been truly helpful to so many of us.

I really appreciate it and the cancer research is available for all of us around the world to share.

X

Laura

[Sunfleury-UK in reply to Lindaura]

I think a lot of us arrive directly into the MyOvacome forum... it took me a little while to realise that its part of a massive structure... there are forums here for all manner of health concerns. Definitely worth having a look around- you can join a few groups and have all of the posts show up on your timeline!

[lesleysage]

Hi Laura,

I'm afraid I can't help with the US but my reply is because my cousin had both breasts removed and so then I got OC, so we completed the papers for permission to access our sample for some research into genetics of breast & ovarian cancer by the Institute of Cancer Research, here in UK. Details are on:-

icr.ac.uk/our-research/rese...

I appreciate this doesn't help now, but you may feel like my cousin & I did.

Warm wishes for a good day. Lesley

[Lindaura in reply to lesleysage]

Thanks so much. I only recently understood that both cancers were related by genetics, but did not get the BRCA test right away.

My doctor put in for it, but still have not had it.

However, when I had my radical debunking surgery in December, j entered the Genome Project. So they havr loads if tissue and blood samples from me, I just wish they had results for me now.

X

[DanielleRice]

Hi Laura, I'm a US'er but live on the East Coast. The most active breast cancer charity in the US is The Susan G. Komen Foundation. Here is a link to the site's information about support groups: ww5.komen.org/BreastCancer/...

Here is something I just learned from my team: Your sister is entitled to ask for and receive Palliative Care. I thought that Palliative Care was the same as Hospice Care--meaning they only care for you if you have no other medical options. But it turns out this is NOT true. Palliative Care is offered in the US to cancer patients who need care managing symptoms of chemo and dealing with mental health issues related to cancer and it is for the patient as well as the family of the patient. Most US hospitals have Palliative Care teams. She should ask about that!! Good luck to you both.

[Lindaura in reply to DanielleRice]

Thanks for that,

I will let her know,

X

Laura