Recurrence in spleen : Had chemo and debulking... - My Ovacome

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Recurrence in spleen

hilaryjane profile image
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Had chemo and debulking surgery 2 years ago. Stage 3 HGS OC. 1st recurrence 3 months ago with lesions in spleen and peritoneum. Consultant advises watch and wait and does not advise splenectomy. CA125 76, no symptoms. Just wondering if anyone out there has lesions in their spleen and what treatment if any they have had. I gather it is unusual for it to recur in the spleen. Trying to find out if laser or radioactive ablation is an option anywhere - any thoughts really welcome, watch and wait is very scary. Thanks.

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hilaryjane
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Goingwiththeflow profile image
Goingwiththeflow

Hi @hilaryjane,

I don't know about what the typical recommendations would be for a recurrence in the spleen, but I can say that from my own experience, a splenectomy was recommended to me when a nodule was found in my spleen on the CT scan prior to my initial debulking surgery.

I know that splenic involvement is quite rare, and that it's hard to find information about it.

I did have the splenectomy during the debulking surgery and so far have not experienced any negative effects from it. But again, I'm not sure if the recommendation would be different with it being a recurrence.

Differentforgirls profile image
Differentforgirls

Hello Hilaryjane.

I can imagine how scary watch & wait must be for you.

I had a splenectomy in June after my 2nd recurrence ( diagnosed 3b HGS OC in Feb 2018, 1st recurrence Nov 2019, 2nd recurrence May 2023 ). I have had debulking followed by chemo 3 times now. I was also taking Niraparib from July 2020 until April 2023.

I’m not sure why your team want to watch & wait. My CA125 was 40 ( although, for me, 40 is a high reading ) when a CT scan was booked for me. Following which an op was booked in.

Which country do you live in? I’m UK.

Maybe talk to your team about why they don’t feel it’s wise for you to have a splenectomy. I am on antibiotics everyday because I no longer have a spleen plus got a pack of emergency antibiotics in case I feel unwell ( sore throat etc.). A spleen helps immunity so, I don’t believe they take it out unless absolutely necessary.

I do hope you can talk to your consultant further about this & they can advise you further.

Take very good care please,

Lynne xx

Skyeplus profile image
Skyeplus

Morning HilaryJane, firstly am sending a big hug. We all need one as this is a scary journey for all of us. I am stage 4 a HGS OC and I had debulking surgery and chemo in 2021/22. I was then on Niraparib until June 2023. A CT scan showed a recurrence/progression to liver spleen and peritoneum. I see my oncologist tomorrow for feedback on my latest CT scan (am half way through more chem). When I saw him in Aug he mentioned the possibility of surgery so am waiting to see what he suggests. I do have a fellow patient who is the same stage as me I.E. stage 4 and experienced the same recurrence /spread and she has had her spleen removed. Good luck xxx

Towergirl profile image
Towergirl

Hi Hilaryjane, I am HGSOV diagnosed 2017, treatment through 2018 of chemotherapy 4 cycles, debunk surgery then 2 more cycles.

Ned for 4 years. Follow ups being with Ct scan each year, with blood test (physical exam when no scan). Decreasing yearly from 4 to 3 to 2 appointments. The last scan in October 2022 showed recurrence mass around liver with 2 small legions in Liver and above spleen the most.

I was offered a 10 hour operation to remove spleen and scrap liver ( debulk) with risks. I took oncologist advice and went with Chemotherapy and after 4 cycles most had disappeared and 2 more cycles later I been left with a tiny deposit still on spleen.

Now on Olaparib reduced from 600 daily to 500. (I’m braca2) 3rd month and doing well.

On recurrence I never had any symptoms!

I’m not sure if my surgeon would just remove spleen, only ever been mentioned as a debulk operation. I would be worried with wait and see with CT scan only given after 3 month intervals. Can you not be given Toxal/Carbo ?

Think you need a second opinion as it is a worrying time. Hugs 🤗

Barmycharm profile image
Barmycharm

Hi I’ve been on watch and wait for about 18 months since first occurrence showed disease in several thoracic areas chest and liver but at that time were fairly small and slow growing. My oncologist recommended w & w and said it’s because you shouldn’t use the chemo too soon and if you are feeling well with no symptoms then the chemo would only make me feel ill. I did have thoracic surgery to remove infected lymph and mass in chest cavity. However now mine is spreading rapidly with tumours in spleen and psoas rapidly increasing and I have a lot of fatigue and pain in my legs. Starting gem/ carbo on Friday.. I did get a second opinion from Prof Fotopoulou and she fully supported my oncologist not to operate but to go straight to gem/ carbo. I was worried on w & w and wasn’t sure if it was the right thing to do but then I did have a year of feeling well and living my best life whilst they kept a close eye on me. I think you should get a second opinion because even if they come back with the same decision it does give you some peace of mind. All the best to you xxx

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