I am hoping for some advice. I am 47 years old and am nearly 4 weeks post cyto-reductive surgery for stage 3C ovarian cancer - biopsy prior to surgery showed it was low grade serous ovarian cancer (lgsoc) and I had been getting my head round that diagnosis. Surgery went well and multidisciplinary team believed they had removed all visible signs of the disease along with part of my bowel my spleen and appendix. I was also left with a temporary ileostomy to allow my body to heal.
However on follow up, the pathology from my surgery has shown that my low grade cancer has turned into high grade ovarian cancer that cannot be classified by the pathologist but shows sarcomatiod features? Is this carcino sarcoma? Prior to surgery I had been assured low grade cannot turn into high grade so I am reeling from this change in diagnosis. It also appears this is extremely rare (even more so than lgsoc) with no agreed treatment. I live in Northern Ireland. My medical team are now seeking to urgently reverse the ileostomy to allow chemotherapy to begin as soon as possible. Is there anyone on this forum with a similar experience or advice? I feel so scared and alone with this new diagnosis.
Claire
Written by
Happyhome24
To view profiles and participate in discussions please or .
What a shock, just when you were coming to terms with what you thought was low grade…it’s done a real number on you!
Try not to panic but getting as much information as possible would help.
Perhaps Ovacome or Target Ovarian might be able to shed some light? By all means talk to your team about what this means and see if you can find a specialist in rare forms of OC. In your circumstances, I think a second opinion is a must have, so that you can gather more insight into into how others have been treated with this kind of OC.
You are not alone! There are many here including me who have periodically been blindsided by OC in different ways. xx
Thank you Lyndy for taking the time to respond - this cancer journey is not easy! I will contact Ovacome helpline and also seek a second opinion. I am feeling less anxious just reading the responses this morning and am really grateful.
The worst part of this journey is the waiting. Lyndy has given good advice (2nd opinion), and once you have more info you can deal with it. While you are waiting try to distract yourself with whatever makes you happy - or something you haven’t done in ages. Writing about how you feel sometimes helps, even if you then throw it away.
The most scary thing is not knowing, I hope you get answers soon but meanwhile, do something that satisfies you!
Hi Claire. Sorry to hear the change in diagnosis, very upsetting for you, having to get your head around something new.. I don’t know how usual that is, but all I can say, if it helps, is that I’ve been diagnosed with stage 4 high grade oc, and have been told it is easier to treat than low grade. I hope that gives you some reassurance and I wish you all the very best x
Thank you Beaver54 - I am trying to reframe things in my mind as I absorb the change in diagnosis - as you say there are more treatment options for high grade. It all feels like such a rollercoaster! Your reply has provided reassurance and is appreciated. 💕
I don't know much about low-grade turning into high-grade, but I'm curious as to why they're waiting to start chemo until after your ileostomy is reversed. I also had a temporary ileostomy and was told I could get it reversed after I finished chemo. I did end up getting mine reversed before starting chemo, but this was because 1) the stoma was high-output and gave me a very hard time/serious quality of life issues; and 2) mine was just LGSOC, so my gyn onc felt that waiting to start chemo wasn't as big a deal. Since high-grade moves faster, I would ask them if it might be possible to start on chemo before reversing the ileostomy, as long as you feel up to it and there isn't some other compelling reason to wait until it's reversed before starting.
Hi Pinkandwhiteprincess, the Consultant I saw said they wanted to restore complete nutrition prior to chemo starting. I have lost a lot of weight (in part from all they removed during the surgery) and the ileostomy has been hard to adjust to so that might be a part of the decision making. Thank you for taking the time to reply as I had just assumed that it wasn’t possible to have chemo with a temporary ileostomy and normal to delay things. I will ask for more information at my next opportunity. Thanks again
Hello ClaireSo sorry to hear your news. I can't offer any insights into the change of diagnosis, but offer my perspective on chemo with an ileostomy. I too had debulking with a temporary ileostomy. They wanted to start my chemo as soon as possible after surgery (HCSOC 3C) and didn't even mention reversing before starting chemo. Chemo started 5 weeks after surgery and I had no issues with the ileostomy (as far as I can recall). There are plenty of ways to fortify foods with extra nutrition (Macmillan dieticians are really useful).
Thank you so much Sally for taking the time to share your experience. My hospital are still recommending a reversal of the stoma prior to chemotherapy and say it will only delay chemo by 3 weeks. I will hopefully see the bowel surgeon soon to discuss options. I really appreciate your positive wishes. Claire
Thank you for your kind replies Bobbylynn and Iris. It makes a difference knowing I am not alone in what I am feeling 💕 I will definitely seek a second opinion.
Thank you Motiva - I have absorbed the shock in change of diagnosis over the last few days and getting my head around things. I have been really assured by the kind and genuine responses to my post. This is such difficult journey we are all on. I will contact the Ovacome helpline and I have reached out to my oncology nurse key worker with questions. Thanks again.
Hi, I rarely reply unless I feel I can help and don’t really have the knowledge base so would hate to ill advise but I just wanted to say, like the others, get the second opinion. I had a slightly similar experience a few years ago but my high grade had returned as low grade. ( I posted at the time, you can scroll back and see the helpful replies) . I asked for second opinion and this specialist in low grade had the biopsies reanalysed and disagreed and felt they were , in fact, high grade. This then changed my treatment plan. I was told it was a very “ grey” area in the reading of the biopsies .Never quite got my head around that! I understand your concern and frustration. I am still here despite a few battles so keep advocating for yourself and use the helpline- they are invaluable. Xx
Thank you Laz66 - it is good to understand that I am not alone where the diagnosis /pathology can change. I get the feeling the Doctors don’t fully understand the pathology at times! I am trying to accept mine is rare, unclassifiable and it is what it is. I am so glad you are still here despite your battles and thank you for your kind words. Best wishes Claire
hi I’ve got stage 4 high grade. Done the chemo and surgery, I also do a lot of other stuff to put the odds back in my direction. There’s so much we can do that people don’t know. It sounds crazy I know but even changing our diet, cutting out sugar and fat can stop some of the cancer pathways. I do a TikTok on all the stuff I’m doing @mymatecancer Don’t loose yourself in the journey you can make a difference xxx
Thank you Jacci - it has been overwhelming and I agree anything proactive we can do to take back control is good. My appetite has disappeared but I have been able to completely cut out caffeine once and for all - which is a start.
Feeling very alone and very scared really resonates. Seems to be particularly part of the OC journey Changes in diagnosis albeit usually from benign to malignant and the treatment uncertainties all make it worse. I feel for you in your very rare situation. I have only noticed 1 or 2 similar posts on this site although they referred to Mullerian so possibly not exactly the same. The only advice I can offer is to phone the Ovacome Helpline as they could have advice about the rare type and advice about chemo with a stoma. It is always useful to have a second opinion with a rare presentation your own team may have a suggestion or perhaps Ovacome. Thinking of you and hoping the pathway to chemo becomes clear soon
Thank you Mariej2021, I really appreciate your kind response. I got a further discussion with my Consultant yesterday and my pathology report has been reviewed by a local Professor of pathology that usually provides second opinions in Northern Ireland (and also receives requests worldwide) and further discussed at MDT meeting. I feel more reassured by this. I will contact Ovacome helpline today. Best wishes Claire
Hi, I was also diagnosed 47, high grade 3C my first surgery appendix removed and colostomy then right to chemo to reduce size of tumor, second surgery (4 months later for splenectomy/reversal) but had lots of complications no reversal so I still have my colostomy 8 years later. I agree with the others! Push for second opinion! Chemo at this stage is more important than the reversal of illeostomy
Thank you for your kind response Cmania - I have been so reassured by everyone taking the time to message. I will continue to ask questions and clarify things with my medical team. At this point they are advising a delay of 3 weeks on chemo (NHS in Northern Ireland is under incredible strain - I have had delays and waiting lists to battle from the beginning) I have a follow up call expected tomorrow. Thanks again - All the best Claire
If it's any help, high grade tumours are usually more responsive to chemo than low grade. Have you considered getting a second opinion? I know it's difficult from NI, but both Liverpool and Manchester have specialist cancer treatment centres with cutting edge research going on, and both Professors have very good reputations. Your consultant can refer you.
Thank you Sopsinger - my pathology has been reviewed by a local Professor of pathology that usually provides second opinions in Northern Ireland (and receives requests worldwide) and I feel more reassured by this. I will continue to ask questions and seek advice from Ovacome. I really appreciate your advice. Thanks again Claire
I am not familiar with low grade changing to high grade but I agree with all the other Teal Sisters that a second opinion is needed which will also determine which chemo/Maintenace drug they use. It is a very overwhelming journey but this is a wonderful site and many, many long term survivors. Hugs from Chicago
Thank you for kind words. This is absolutely an overwhelming journey we are all on. I am trying to be as positive as I can and stories of long term survivors give me hope! All the best Claire
Hi claire, sorry you are going through all the worry of a changed diagnosis. I was diagnosed with carsinosarcoma stage 3c in 2017. Yes it is rare which can limit treatment options but for me the chemo worked wonders. I had a very good response to chemo. The disease has been stable since finishing the treatment. I have a scan every 3 months to check and so far it's been ok. I was unable to have surgery as there were nodules of the disease on various organs and the surgeon didn't think he would be able to remove it all. So I have been very fortunate . I wish you the very best for the future
Anne, you are the only other person I know of with this rare carcinosarcoma and I am so pleased you have had such a great outcome. This gives me such much hope. My pathology is stating - sarcomatoid features but unclassifiable so I am not sure if it is exactly the same but get the feeling nobody really understands the pathology! Would you mind if I ask what chemo you were on that gave you such a good response? Thank you for taking the time to share your experience - it means so much. All the best Claire
Hi Claire. T he chemo was a combination o Carboplatin and Paclitaxol given weekly. This is an often used chemo for ovarian cancer. It does seem hard to diagnose this type of cancer. My local hospital was unable to identify it despite doing 2 biopsies, they referred me to Christie s who identified quickly.If I can be of any further help please contact me.
Dear Claire,I totally agree with the girls, a second opinion could be very useful & perhaps give you the answers you need. Take care keep positive.
And please try not too worry too much l have high grade serious grade 3 but lm 6 years into the journey and have been NED since 2019 /20 chemo and a complicated health record but doing really well its all such a shock for us all believe me. But sending love & hugs. SheilaFxxx
Thank you Sheila for your kind words - stories like yours give me so much hope. I have two daughters aged 14 and 15 and just pray I can get to see them grow up xx best wishes Claire
so sorry to hear you’re going through this. I’d get a second opinion from Prof Gourley at Edinburgh or Dr Susanna Banerjee at the Royal Marsden, both experts in low grade. They both research into it and know it well.
I follow Jane McLelland’s book How to starve cancer which is a cocktail of non toxic off label cheaper drugs which are being trialled for all sorts of cancers. It worth reading and seeing them as a way to take some control back without doing damage.
Thanks Alex - I will look into that book. Everything feels out of control and I can see the benefits of investigating options. I really appreciate you sharing your perspective. All the best - Claire
Thank you so much for your post and for sharing your experiences. I was very sorry to learn how scared and alone you had been feeling since the change in your diagnosis. I can see you've had lots of informative responses from the MyOvacome community, but I also wanted to let you know that the Ovacome support team are here for you if you would ever like to talk things through. You can send us a message directly here on the forum, email support@ovacome.org.uk or give our friendly support line a call on 0800 008 7054. We’re here Monday – Friday, 10am – 5pm, to help with questions, provide information or just have a chat about anything that’s on your mind.
I can see that several forum members have mentioned getting a second opinion and I wanted to share Ovacome’s information resource on this subject which can be found here on our website: ovacome.org.uk/getting-a-se... . I hope this guidance is useful. Please do let us know if you have any queries.
I hope you have had some further clarity and reassurance from your clinical team and that speaking with the forum community has helped you to feel less alone at this time. Please do get in touch if there’s anything we may be able to support with. More details about Ovacome support services can be found through this link: ovacome.org.uk/Pages/Catego... .
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Ovarian cancer stage 2c - grade 3 with high hopes of a \"CURE\"
CA125 rising but clear scan, low grade ovarian cancer.
Stage 2 low grade serous ovarian cancer
Recent diagnosis Low Grade stage 3 serous carcinoma OC
2015 - Ovarian Cancer, Low grade, 2a Serous
