Stage 3 Ovarian Cancer - too extensive for surgery & thinking of refusing chemo

Hi , I’m so sorry about your mum’s diagnosis, and how difficult this must be for you. I’m stage 3c (61), and when I was first diagnosed in January I wanted quality of life over quantity and still do. It’s not uncommon to have chemo before surgery to shrink tumours or have chemo if tumour is inoperable. There are so many treatment options. I did decide to have treatment, 4 cycles of chemotherapy to shrink the tumours, then surgery followed by 2 more chemo. Treatment was successful and now there is no evidence of disease. I’m on maintenance treatment now to keep the cancer at bay. We all respond to treatment differently , it’s hard but for me the side effects from chemotherapy were so much more manageable than I expected. Throughout my treatment I have had good care and quality of life. I have found this site , ovacome and target ovarian cancer really informative .There are many ladies in there 70’s who use the online community support and family members can access support too. Ovacome and target ovarian cancer has support lines that you or your mum could call to talk everything through. It is a really tough time, but there is so much support, you and your family are not on your own. I have also found visiting Maggies centre so helpful if you have one nearby they are so welcoming. Take care, best wishes for whatever decisions your mum makes. X

Hi, my aunt (spritely 75 year old) was diagnosed with stage 3b peritoneal cancer earlier this year. I feared the worst, however after 3x chemo then surgery then 3x chemo she has recently been confirmed cancer free (no evidence of disease) and has been feeling better than before the diagnosis when she was having stomach pains and discomfort (though she has disagreed with the ongoing chemo tablets so has just come off these). I’m truly amazed by her progress.
Chemo to see how the cancer responds before surgery seems to be the norm. I found the Macmillan and Cancer Research websites very useful sources of info, but wouldn’t recommend a general google - stick to trusted sources of info! The MacMillan cancer nurses can also be very helpful to chat to as they’ve seen and heard it all before.

Please would you mind telling me how your mum was diagnosed and if it took long.  I hope I'm not seeming insensitive but I have been seeing the doctors for months and I'm so terrified. I have had tests that have come back clear and the are reluctant to refer me .

I'm so sorry that your family is going through this. 

I have staff free 3c inoperable he ovarian cancer. I had an allergic reaction to paxlataxil at my 2nd chemo session. I finished my chemotherapy with carboplatin. My tumours are smaller but the cancer is now around (not in) my colon.

I have recently started taking niraparib.

I know exactly how your mother is thinking. She is so brave in telling you how she feels about her diagnosis. It's a testament to what seems to be a close, trusting relationship.

Unfortunately, a cancer diagnosis brings all sorts of responsibilities with it. Often, it feels like your life is no longer your own. Every decision is based on how other people feel and not always on what is the best path.

It may help your mother to talk with other women who have taken this journey. Nobody can say how well somebody will tolerate chemo. Some people sail through it and others suffer badly. 

It's worth contacting your local cancer charity to see what services are available to you and your mother. 

I hope your mother makes her decision from an informed position and her choice is accepted and respected.

Make sure to take care of yourself, too. You're going to need each other in the coming months (hopefully years)

Also, your mother should have been assigned a clinical specialist. They're a great resource for information and support.

Could you attend hospital appointments? Ask questions. Call the nurse specialist with ANY questions. They'll be glad that you're the to support your mother. 

Sorry I've given you so much to read. I hope I've been able to give you some useful information. 

My GP took months to catch on that I have ovarian cancer. He only took me seriously when I developed a huge lump on my abdomen.

Have you had a colonoscopy? Or any scans?  If you're having symptoms then something is obviously wrong - although, if your CA25 is normal, it's very unlikely to be ovarian cancer.

Unfortunately it seems that the only way to get any proper tests done is to persist. Don't let it go. You're entitled to have the tests you need to get a diagnosis.

Good luck with your GP. Fingers crossed it's not the diagnosis that you're dreading.

Thankyou so much for the reply. I am so grateful.  I have been seeing the g.p. since the beginning of the year, unfortunately it's hardly ever the same one.  They have been on the ball sending me for scans e.g colonoscopy, endoscopy..I had 2 scans and neither showed the ovaries due to too much gas in the way. However it did show a distended  fallopian tube with some free fluid. It was suggested that gynae advice was requested but it wasn't done. That was in August, it has been asked for this week.

I have been feeling full with bloating for months and find it difficult to eat..and fatigued. I do get a feeling of of seeing very bloated town the right side side and as far up as my liver. 

My anxiety hit the roof..I asked for a referral to Gynae and was refused but at least now the doctor has asked for advice. 

I am aware of all the red flags and that's why I went to see the GP right away...they are putting it down to ibs. Which I have read on Google is a common misdiagnosis and it terrifies me after almost 10 months.  I have gone from being hopeful to having no hope at all. 

My anxiety is now upsetting the family and I spend a lot of my time in bed.

I lost my son with a brain tumour, he was 29. A few years later I lost my only brother with the same. I am 72 and feel so alone....thankyou again xx

Please don't give up with the GP. Don't let them ignore you.

I was diagnosed with endometriosis some years ago. The medical attitude at the time was it was resolved with a laparoscopic diathermy. They were so wrong. Even now, after menopause, it's still a problem. I have spoken with the consultant carrying out my (third) colonoscopy and my oncology consultant and they both tell me that it is now recognised as a factor in all abdominal issues.

I hope you get a proper diagnosis soon. Then you'll be on the right track and, hopefully, things will get easier.

You must push for a referral.  I was diagnosed with stage 4 ovarian cancer in January this year and I had no symptoms until December apart from loss of appetite throughout 2023.  In  December I felt mild pain in my abdomen and at beginning of January I felt as if I had a prolapsed womb which is when I went to my GP.  I was immediately given an emergency appointment with gynaecologist and by end of January the diagnosis was confirmed and I started chemo in February.  
It is important that you make your GP aware that ovarian cancer is often detected too late because the symptoms are so diverse and in fact do not always present themselves.  There isn’t one symptom that is found in all ovarian cancer cases and as I’ve stated I didn’t have any symptoms until it was too late.  
PLEASE, PLEASE take these replies to your GP and demand a referral to a gynaecological cancer pathway.  Or contact MacMillan at your local hospital for advice.  

Thankyou so much...Im so sorry that you have gone through this. 

I have been a frequent visitor to the surgery and a regular caller on the phone. It's on my notes that I seem focused on ovarian cancer! I'm terrified they won't be able to do anything for me x