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Low grade ovarian cancer

valrene profile image
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Thank you for letting me join, hope this is ok for me to join,my dearest friend was diagnosed with low grade stage 3a2 Serous Adenocarcinoma low grade about a month ago after having a hysterectomy, having her odium ( stomach lining) removed next Monday as cancer cells have traveled there, my friend is so worried what is going to happen to her. The surgeon in the uk said they don’t give chemo in this country for low grade cancer, it seems in other country’s they do give Chemo for low grade. Just wondering if there is anybody on this site who lives in the UK with the same low grade as my friend and what there treatment and prognosis is, thank you for any response to my question, need to help my friend or get her to join this group so she can ask her own questions xxx

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valrene
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Droomfles profile image
Droomfles

Dear Valrene,

I'm not in the UK but the Netherlands. Also low grade, but serous. And also stage 3a (stage 2 but some cells were found in the omentum after taking it out) I can't tell you if there's any hospitals that do chemo in the UK. But I can tell you what my doctors think the best treatment with the best prognosis at this point is: Complete primary debulking surgery followed by six cycles of chemo drugs carboplatin/taxol. And after that hormonal maintenance therapy (for me 1 pill a day of letrozole). Read the studies of Prof. Gershenson online and maybe try to contact him for questions you have. It seems to be he's the low grade expert and he answered my e-mails. I hope they'll give her the best treatment possible! Good luck!

Esther

GwenHP profile image
GwenHP

Valrene I’m glad you found our online group. Please also encourage your friend to join. It helps a lot to have people to talk with that have been there. Even though low grade ovarian cancer is one of the more rare forms there are a lot of lessons learned we share here.

JNZ2 profile image
JNZ2

Dear Valrene. Chemotherapy+hormone maintenance vs hormone maintenance alone depends on your clinician. There is data to suggest the 3 year rates are similar (at ~30% recurrence) but beyond that we only have longer term data for chemo+hormone inhibitors and given overall recurrence rates are very high there is a possibility the progression curve may diverge at some point- essentially doctors don't know what is better. I just had just hormone inhibitors for stage 2b and to be honest I don't know if I gave up my chance of a slim cure with no chemo or not. Because there isn't good evidence to support one over the other there should be room for the patient to be involved in the decision process if they wish. That said in NZ my doctors refused chemo. Cureourovariancancer.org is the only organisation specifically dedicated to low grade and is a good source of low grade specific information. It's run by women with low-grade. They have one interview with Dr Gershenson on their Facebook page and will release another shortly addressing treatment. SHARE did have an interview with Dr Fader scheduled (another low-grade doctor) but it was cancelled and I don't think it's been rescheduled. Your friend is lucky to have someone interested in advocating for her.

valrene profile image
valrene in reply to JNZ2

Thank you so much JNZ2 for your reply, my friend is having her stomach lining removed today, waiting for histology reports then actually seeing an oncologist to find if the cells have spread.There isn’t so much written about Low Grade she is desperate to know her fate as you all must be, seems the treatment for low grade is so different to the faster growing cells. Will have a look at the site for her, Thank you so much for your help xxx

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