At a time of questioning in my journey with this disease. What I really wish to determine is how many ladies with advanced disease (Stage 1V ) had surgery following diagnosis. Are there people who have had no surgery with long term survival? It’s quite hard to establish whether you are following the best treatment plan ,with so many conflicting accounts. Is it always best to get 2nd opinions ??? My team are very matter of fact , very direct as in this is the path we are following , and it feels very hard to question this ???? Would greatly value any advice/experiences from ladies who are further along the road than me (diagnosis April 2019, stage 1V , 1st line carbo/ taxol, olaparib is where I’m at)
Some stories on here are so inspirational, so hoping for help
Jennifer
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Rankij11
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I think you are right to ask questions. I was diagnosed stage 4 in 2015 and given 4 carbo taxel rounds at first. If I had asked at that point my oncologist would probably have said I was inoperable because my cancer was wound around my colon.
But after the 4 chemo I had optimal debulking , follow up chemo and was then NED for 4.5 years.
Things can and do change.
I think there is often a big difference between your local hospital offering standard treatment and what a specialist or research centre may be able to offer. In my experience no one minds you checking that you are getting the best treatment for your circumstances and oncologists respond to interested active patients xx
I was diagnosed with Stage 4 OC last June (2019), with the cancer having spread to my colon, stomach lining and liver.
I started with 3 rounds of Taxol and carboplatin, then a full hysterectomy with debulking, then another 3 rounds of Taxol and carboplatin. My CA 125 had been decreasing each month - quite dramatically, but towards the end of my 6th round, the cancer in my liver started to grow in size, my liver function numbers were increasing and my CA 125 was moving back up. So, in January 2020, I started on Doxil. Since, my liver lesions have been decreasing in size, my liver function numbers and my CA 125 both going down. I will stay on Doxil for as long as it works. My oncologist told me I will always be on something to manage my cancer.
In January, I changed my oncologist. The previous doc was too wish-washy and I really wanted someone who seemed invested in me and could tell me the hard things I needed to hear. So glad I made the change. I know that my current doc would have strongly recommended surgery during my first line of defense as well.
If after asking questions you still don’t feel your doc is invested in you and your care, I recommend finding a new doc. For me, it was the best thing I ever did!
Thank you so much for sharing your experiences. As you say I think it’s really important to find the right doc to fight this with you , they are only mere mortals as well, and some will be better than others.
How right you are to question so I wish you good research answers.
My journey isn't relevant for your study as I was Grade I a when I was diagnosed in 2010. I had surgery followed over the years by so many different regimes but here I am 10 years later at Grade IV.
Thank you, it’s so nice to get responses. I guess your story shows how many different pathways and outcomes this disease has ? And you must have had more than your share of ups and downs by the sound of it
I do hope you are managing at present to be as well as possible
I have two suggestions, both from personal experience (Stage 3c in 2011 & 2013).
Defintely ask for a second opinion; my GP asked the team headed by Professor Christina Fotopoulou at Queen Charlotte Hospital (imperial.ac.uk/people/c.fot... in 2013 when my regional hospital at Addenbrookes said surgery on my recurrence was "too high a risk of mortality"; after a successful operation with Prof Fotopoulou's team, I returned to the oncologist at Addenbrookes for dose-dense carboplatin & taxol with fortnightly Avastin. I've remained free of my cancer (clear cell carcinoma) since.
Second suggestion is phone the Ovacome Support Helpline on freephone 0800 008 7054 as they will listen to your detail and may well be able to guide you. Prof. Fotopoulou is one the many top specialists on the Ovacome Medical Advisory Board.
Thank you for your response , which is really helpful! That is such an inspiring history. I’m going to start some action today ! Hopefully the hospitals will get less busy soon to cope with these sort of referrals . I’ve heard Prof Fotopoulou mentioned before on here as the person to see if possible.
Really appreciate response so thank and all good wishes for your continuing good health
I thought there was something on this forum or prepared by Ovacome on handling second opinion requests but I can't find them quickly. The Ovacome website has a chat facility if phoning the helpline isn't easy; they also answer emails.
I am Stage 4b, as I was at diagnosis in January 2018, and its epithelial serous OC with non small cell neuroendocrine differentiation. Whether they offer surgery initially is usually down to what they can see in terms of where the cancer actually is - in my case, I had no ascites and no symptoms I was aware of other than finding a very large inguinal lymph node, but there was a 5cm tumour on the pelvic wall, along with the ovaries and cancer spots elsewhere not visible on the scans, so they did a full debulking surgery within 3 weeks. After that, they wanted to give adjuvant chemotherapy (carboplatin, paclitaxel and avastin) but I refused it. 18 months later, I had some lymph nodes removed from very near the surface of the skin in the groin which were cancerous, and now, I am having treatment with carboplatin singly to treat for ascites (cancer activity in the peritoneum and mesentery and various internal lymph nodes) which seems to be working quite well so far, since my CA125 had fallen from just under 1200 to 127 after only two treatments, and the ascites seems to have disappeared. I know it will be back again at some point, just not sure how long after chemo stops it will return, but because of Covid19, having the ascites drained wasn't something they were prepared to risk, whereas chemo was because I was at the 'imminent threat to life stage' which is a deciding factor for treatment in this current, risky world of coronavirus, so I thought I'd give it a go. Obviously that means I'm now at much more risk from Covid 19, but I was on my way to the exit door anyway, so its presumably about the balance of risk.
Treatment options also differ depending on what type of OC you have, which you don't say...
High grade serous for me so pretty straight forward . I was offered the routine carbo/ taxol /Avastin trial but because there was a deposit quite near to bowel they cut out the Avastin, after 3 they said consider surgery but nothing happened, then after 6. I even got an appointment for pre-surgical assessment and went and then they said no go ! I sort of went along with it but I have this niggle of doubt??? Sounds like you have done well considering surgery only until now ?
Thank you for your input, it all helps
I really hope your present treatment continues going well
What reason did they give for saying surgery was no go? I ended up having 15cm of lower bowel removed and resected because of cancer spots all over it, but did they say why it was a no go, exactly?
Because of lesions on liver , which made removing rest of it ( I.e the main lesion on ovary and some deposits in abdomen) “not helpful”. So I accepted that but since read of people in same position having surgery ???
I was diagnosed 4b ovarian cancer also on peritoneal and aortic lymph notes in July 2018 had 4 carboplatin paclitaxol c h emo should have then had surgery but liver and spleen docs told oncologist they could not successfully remove all cancer from them I did not know I even had serious epithelial cancer on them had 4 more of that chemo till Feb 19 then 18 avastin till March 2020. It gave me a goo d year as oncologist said it would. Now ca125 is rising again scan in 2 weeks consultant 4 weeks for what next. Hope this helps you. Good luck with your journey.
Thank you. I was hoping for surgery but oncologist told me the debulking op is a team surgery and when two surgeons are not happy th e y can get you out of surgery disease free then they follow their advice. I was devastated at first but as it is stage 4 it was never going to st a y away so I just decided I won't have to waste precious months recovering from the big op. I am happy with my team and have faith in them. Good luck with you j o urney.
I would I questioned mine but it was the hospice who went onto my nhs notes and explained that of the many surgeons involved in the opportunity it was the liver and spleen surgeons who had said t hey could not get those areas clear enough of the disease and if they left some it would spread rapidly. Good luck you need to be happy with the decision.
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Survival stories!?
Does anyone else on here have MRI scans as opposed to CT scans?
My mother's good news!
Avastin
Update …… Good News
