My sister was diagnosed with cancer at the end of December, but even though she’s been in ICU since the start of January after the tumour in her abdomen grew so rapidly over the week after Christmas we took her into A&E only to find she may pass during the night (she had acquired an infection)
Bur even now, the doctors still don’t know 100% what cancer it is, they did biopsy’s and a full genome sequence and they believe it to be a Germ cell tumour, by the hormone markers in her blood it’s rapid growth.
They said they believe it may be a choriocarcinoma, online it says Choriocarcinoma is a very rare type of cancer, It can develop if the cells left behind after a pregnancy become cancerous. But my sister has learning difficulties and has never had a relationship and we can stake our lives on her virginity!
I understand the doctors have their reasons for believing it to Be that, but it’s so frustrating especially as after a 4 day course of chemo when she was admitted in the ICU only seemed to stop the tumour growing. Two weeks ago she had another dose of chemo but only for one day and a lower dose because she was still so poorly after a chest infection nearly taking her life.
There’s still no obvious signs that the tumours shrunk and when you read online how well these tumours react to chemo and still see nothing, is breaking all our hearts and we have no idea what’s going to happen. The doctors in icu are going to be speaking with the oncologists about whether it’s worth it to give her more chemo or to focus on her quality of life.
I just don’t know what to think about all of this…whenever we sit with the doctors all they tell us is how she came in really poorly, and they’ve kept her stable all this time, but always stress that the ventilator and dialysis is the only thing keeping her alive unless that tumour shrinks. It makes it hard to take in any news they give you that others would take as “positive” eg. She’s now breathing on her own and off all sedation. But because you know that rare tumour is still sat their killing her you can’t feel any relief.
Hi Meggy I thought I would drop in past and welcome you to this group.
I also have a rare type of cancer but we were able to successfully navigate this, but compared to your sisters challenges my journey has been uneventful.
I see that you have put up a post in the Family and friends where you will connect with others supporting family and friends
You can also put a subject search into the search tool 
near the top, so do have a tech for Choriocarcinoma and see if there are any post about this,
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All the very best ((hugs))
Hi Meggy, I am so so sorry to hear about your sister. My sincere condolences to you and all the family.
Some cancers can be very aggressive and unpredictable resulting little or no options being available. I am glad that she was surrounded by her family and her passing was peaceful.
You may benefit from talking with others who are walking this journey so you may want to consider joining and posting in our Bereaved family and friends group as you can talk with others who are navigating this very challenging time.
Supportive ((hugs))
