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Tried Ovarian Cancer board with no reply

Jodie VanZant
Posts: 4
Joined: Aug 2010

Hello all,
I am fairly new to ACS I would like to start off by saying hello and god bless.
I am a caregiver to my mother she is 63, very young in my eyes. At 40 years of age she was dx with bc, she went through chemo, radiation and had a partial mastectomy. for 20 years she was in remission. Last year at the age of 62 she was dx with Ovarian cancer stage IIIc, an 8 inch tumor was removed during the debulking followed by 6 months of chemo therapy, (Taxol and Carboplatin), she was clear after that but 6 months later the cancer came back but in her brain this time, she is now stage IV.....She lost all function in the right hand side of her body and she was extremely disoriented, we had to rush her to the ER and they put her in ICU for 4 days, hospital for a week and an aftercare center for a month following. 4 tumors ranging from .05 to 3.2 mm, she went through 14 treatments of radiation to the whole brain and the tumors shrunk but did not go away.....Next step was Gamma knife radiosurgery....so we still had hope, her oncologist set her up for the procedure and 2 days before that was to happen her insurance denied it so an appeal was filed, 2 mo waiting and not being able to do anything the tumors continued to grow......FINALLY it was approved, 2 days before the surgery she lost full function of the right hand side of her body again and also extremely disoriented again. Yesterday she had a MRI before the Gamma Knife surgery and the tumors more than tripled in size, one of the tumors measures 18 mm and the other is around 12 mm and the other 2 are 2 mm and 3 mm. We now have to wait 6 weeks before they do another MRI to see if the Gamma knife worked or not. I know this is very long winded but I wanted to give you the details and I am wondering if anyone out there has the same situation and what the outcome was or is.

Also she is BRCA1+ and my sister and I are also positive.

Chris_W
Posts: 28
Joined: Apr 2011

Hi Jodie

I'm the same age as you, and I agree, your mother is young. My situation is the reverse of yours, my mother is my caregiver and I have a primary brain tumour. By what you said, your mother's main tumour and mine are in the same place, left frontal along the right motor strip. I might be wrong, but her symptoms are very much like mine.

It's rare that a brain tumour is secondary, that brain/blood barrier makes it such that cancers in the body don't normally settle in the brain without being elsewhere. What have the surgeons & oncologists said about that? Is it a primary tumour? Do you know what kind it is? You said she was stage IV, but cancer in the brain is a very different demon than cancer elsewhere in the body. If you can get the type of tumour, someone here will have more experience to share. Not all stage IV's are bad news, there are plenty of really impressive success stories on here.

I'm not the sort of person to sugar-coat things, I guess that's because I'm living it myself and I wish doctors had been brutally honest with me. What your mother is experiencing could be permanent or not. Radiotherapy causes brain damage, no secrets there, but what damage it does is normally only seen many years after the radiation is done.

Your post wasn't long-winded, I actually have many questions. When was her gamma knife treatment? When was her last surgery? It took me a year of extremely hard physiotherapy to regain movement on my right side. My brain had to find new pathways to find a way to move again. From what you wrote, I can imagine her regaining at least some movement on her right side, it just takes a lot of time and work.

What I am unclear about, is whether she had chemo treatment for her brain tumours? Everyone on here pretty much has experience with Temodar, including me. It's a very tolerable chemo.

I think other people will have questions, my main curiosity is whether this is connected to her ovarian cancer?

I'm sorry I haven't really been supportive here, I am empathetic and can certainly understand what she is going through. I honestly believe that illness is harder on the caregivers than on the patients.

You have many questions, I hope you'll get answers here, but please, please, please write them down and give them to your mother's surgeon and also to the clinical nurse. It's so important and as people on this board will attest, you'll soon become an expert in neurosurgery... that's a good thing, the more you understand, the better your questions will become. Don't let anyone sugar coat things, and demand answers from the doctors, that's their job.

My best wishes
Chris

BenLenBo's picture
BenLenBo
Posts: 141
Joined: Feb 2012

I am so sorry to hear that your mother is struggling from cancer recurrances. The only thing we were told when our son was diagnoised was that, when one has radiation, it is the radiation that can spring forth more cancer else where in the body. Before our son even began his treatment, a full head to toe scan was done to make sure he had not hot spots anywhere-he was clean.

This site has been a great resource, there is always someone who has gone through or going through the same struggle.

Prayers for healing!

Carol

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