High grade stage 1c2: Hi I am writing about my... - My Ovacome

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High grade stage 1c2

Meandsister
Meandsister

Hi I am writing about my sister. We both have tested positive for brca1 mutation, and the profolactic surgery has relieved my sister has high grade serious carcinoma on outside of one ovary. Timor was small only 3mm by 0.5 cm. She had a further debunking surgery which relived negative for everything. The oncologist has said she doesn’t need chemo. But everything I have read recommends chemo for stage 1c2 high grade OC. I am just feeling so frustrated by this decision. Just wanting to hear what other’s thoughts are on this. Would appreciate your comments. Thanks.

7 Replies

Hi there. I'm sorry your sister is affected by this disease. If unsure about the currently proposed treatment plan, she might want to reach out to another cancer center for a second opinion, providing her medical notes/records.

In the US, that could be e. g. Sloan Kettering or MD Anderson. In the UK you could approach e. g. The Christies or The Royal Marsden.

All the best. Maus

Hi I was also diagnosed stage 1c2 in July 2016. Had a full hysterectomy and appendix removed I was 64 at the time. I was highly recommended by both my surgeon and oncologist to have follow up chemo which I did. I have remained all clear ever since and long may it continue. I had six cycle of carboplatin and found it doable, just made me feel extremely tired. I actually welcomed the chemo for extra peace of mind. If your sister feels the same way get her to insist on a second opinion. I hope all goes well. x

I would look up NICE guidelines if you are in the UK.

Scotland has SiGN as well.

I am almost sure chemo is definitely for 1c onwards.

Take care X

I had the same and was advised to have chemo. I had carboplatin and taxol. I lost all my hair and was exhausted . The tiredness continued for near 12 months after it finished . I have tested clear for 21months and have never felt better. No regrets at all.

Chemo is very destructive on the body, and if her Dr says she doesn’t need it she should be jumping for joy. It attacks both healthy cells and cancer cells, and it’s not guaranteed that it will kill all cancer cells.

I had chemo and within weeks of my last one I was diagnosed with breast cancer, after having the full debunking for Ovarian followed by 6 rounds of chemo. The Drs will keep a very close eye on her, especially as they know she has the brca gene, and hopefully the surgery has removed all the nasty bits. Luckily you have both been diagnosed early with the brca gene, so you will be monitored and offered preventive surgery at certain ages. There is a great support group on FB for carriers, it’s worth checking out.

Good luck to both of you.

Gini x

Just wanted to thank you for all your responses. It actually very touching how people care. We have a second opinion booked with my oncology gynaecologist. She is very anxious and doesn’t like to think about chemo, which she has had in the past for her grade 3 breast cancer, 6 years ago. I just try to support her and gently push her so we do do our best to uncover every stone, and not avoid something because of fear. She hated chemo when she had it for her breast cancer and this is what she is remembering. Your all in my prayers as you all fight this beast. I have surgery for a hysterectomy in the next few weeks. I have a cyst in one ovary, praying that’s all it is. Thanks all and god bless. Ann

Just an update, I had ovaries, Fallopian tubes removed and hysterectomy in oct. the mass in ovary was a cyst. My sister was offered three rounds of chemo, which she completed. Now I am just feeling so fearful though. Hoping and parying she will be ok with a long health period, or just stay cancer free forever. Anyway. With high grade stage 1c have many reoccurrences or maybe none. Blessing to you all! Alana

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