My Ovacome
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Scared and not sure what to do

Scared and not sure what to do

Hi all- after a hellish 2 and a half month wait since my first visit to the GP I have now been diagnosed with low grade 1A ovarian cancer. I'm really confused though. My surgery removed the cyst, right ovary, right tube, omentum and took a biopsy of the left ovary and the peritoneum. My consultant has said though that the staging is not a proper staging and I will need to have a complete hysterectomy and lymph node biopsy to get the true staging. I'm only 36 and don't have any children and would still like that option. He also said I have an extremely high number of hormone receptors and so would be put on letrozole but no chemo as it's low grade.

I don't know what kind of cancer it is- `i forgot to ask and it was just so much to take in. I asked about IVF and he said because of the high number of hormone receptors this was a bad idea and would most likely be fatal- a word he used more than once. I feel like he's scared me into having a full hysterectomy when I've read about women with stage 1a not having this. I think i'm going to get a second opinion for peace of mind.

Does anyone have any thoughts on this? Am I being stupid and should just do the hysterectomy to make my chances better? Am feeling pretty scared and confused at the moment and would appreciate any advice.

Thanks,

Chrissie x x

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Most common type of ovarian cancer is epithelial. The only low-grade (at least recognized in the US) is adenocarcinoma which can be high or low grade. Ovarian cancer has a high reoccurrence rate and if /i/ had the option to get a preventive surgery to reduce those odds, I would. I am sure you can ring up your GP and ask about the type of cancer specifically, as it should be right on the pathology report.

You are at an incredible young age to have ovarian cancer and I would STRONGLY recommend getting a genetic testing done. There are certain drugs available (specifically PARP inhibitors) that can help if you are BRCA positive.

On a side note, most doctors are hesitant to remove both ovaries for individuals who are not through menopause. Considering your consultant recommended that, I would get a second opinion at least. Even if the suggestion is the same, you can be more confident in whatever decision you choose.

Wishing you the best,

Kris x

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Chris, first, no question is stupid. Ask for hard copies of all your tests and biopsies so far. Read them. Learn about your disease. Knowledge is power. Get a second opinion ASAP. Do not be afraid to ask ANY question. This is YOUR LIFE. Get the genetic testing done right away. The results may open new options. As to IVF, there is not enough longitudinal data to disprove that IVF does NOT cause female cancers. Surrogacy might be a healthier option for you. The more accurate information you have, the better your decision making will be.

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I don't know anything about low grade so will not suggest anything except a second opinion for your peace of mind. Wishing you luck-I just love your photo and your beautiful Dalmatian.

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Hi Chrissie,

I definitely think you should get a second opinion. Don't worry about offending your doctor (in case you were worried!) they are used to it. It sounds like it has been caught early and that's a good thing. Whereabouts in the county are you? Are you able to get a referral to one of the big cancer hospitals? Your GP should be able to write directly to whoever you want to see or help you decide what to do. There's info in the pinned post on this forum about getting a second opinion.

Good luck and keep us posted.

Vicki x

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Hi Chrissie

Sorry to hear your dx I think you are right to ask questions- how about ringing Ovacome help line- it's nurse led and in my experience they really help you to think through the right questions to ask and will know more about your particular diagnosis.

Lxx

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Hi Chrissie

I agree with Linda and other posts here. Ring Ovacome and definitely get a second opinion from one of the main cancer centres - Ovacome may be able to advise on which these are. You have a right to a second opinion and you need to speak to your GP as they'll need to get it for you. I know it's difficult when you've received such a shock, but try to act as soon as you can. I got additional practical and psychological support from Macmillan and Maggies Centres. Wishing you the very best of luck with all this. xx Sundra

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Thank you so much all for taking the time to reply. I called my CNS who said I have low grade serous carcinoma stage 1a- apparently quite rare! I will definitely be phoning ovacome and my gp to get a second opinion. I'm in Edinburgh and my appointment in the 5th is with someone who specialises in low grade serous carcinoma- not sure if allowed to post names here. Thankfully I have a hugely supportive partner who is open to adoption if we do want to have kids and my mum ( who is on her last week of radiotherapy for breast cancer) is a massive support and inspiration.

Thank you again ladies and much love to all on this journey X x

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there may well be a protocol in place whereby you can be referred to speak with someone from the fertility department who is designated to link with oncology teams... there often is. We were referred , met with a consultant very quickly and had a very useful conversation.... xx

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Hi cesharpe

I've messaged you . I'm sure It's the same guy who you have an appointment with. Please keep us informed. Gwen xx

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Hi Chrissie,

Like you I had a stage , well differentiated (think that's the same as low grade) and I had major surgery (ovaries uterus omentim etc etc) but no further treatment. This was back in 1988 when there was little or no information available on OC and not many options.

Like you I was young (34) but I'd had my 2 boys. I have since learned that preserving your fertility is often an option with stage 1 and I would absolutely seek further options and opinions. It's your body and your future life and you shouldn't t to be rushed into anything that would be irreversible and that you might regret. I used to ask the medics 'What would you advise if I was your wife, daughter, mother?'

Wishing you all the very best.

Catherine x

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Stage1!

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Wow Catherine- 1988! That's fantastic. Do you mind me asking if you have had any recurrences? x x

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Hi Chrissie,

No, nothing at all. They kept an eye on me for a few years (laporoscopies, CA125 tests). A few scares along the way but nothing that didn't turn out to have an innocent explanation. Very very fortunate I know considering the terrible journeys many of the ladies on here have endured. Meant to mention before if there was possibility of harvesting eggs and/or ovarian tissue if you do go ahead with the bigger op? Also wouldn't a CT scan give them information about any residual disease?

As I said, give it careful thought and be informed as well as you can be.

Hope you get some peace of mind soon as to the best option for you.

Catherine x

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Hi Chrissie,

I'm so sorry for the tough journey that you've had. I remember reading your earlier posts and and hoping you would get some good news and all would be benign. I do feel, as others have said, that you should never fell rushed in these situations, if you can get some further support or a second opinion I would go for it.

I really empathise as you are still so young and. I too am 1a and due to see the consultant at the end of the month for a full explanation (!!). Whilst I know very little about what they found, I had a total hysterectomy and removal of both ovaries, a couple of weeks after the tumor was found, I believe I made the best decision for me. I could have kept my other ovary but, I was told the chances of having to have it removed at a later date were pretty high but, had I been your age (I'm 10 years) older I may well have taken that option, especially if the pathology is good on the remaining ovary.

I really feel for you and do appreciate it may seem very confusing. Every case is ironically individual. In hindsight, I wish I had more time to evaluate,question and come to terms with what lay ahead but, as most of these fantastic ladies will tell you unless you ask they just tend to crack on, especially if there are concerns what you have may be cancerous.

I'm not sure I've been much help but, rest assured I will be thinking of you and we are all here to support you if you need this...this forum is an absolute blessing I can tell you!

Thinking of you Clare xx

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