has anyone had 6 rounds of chemo prior to surgery? My mum has high grade serous, not sure which stage, I think she is stage 3 at least, but now I’m worried she is stage 4 because the doctors want to do 6 rounds of chemo instead of 3 before surgery. They have said her gall bladder and spleen will need to be removed, but I’m not sure if the cancer is inside these organs or on them and I think there’s a difference where staging is concerned.
Thank you in advance for any advice you can give me and and stories of hope.
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Shorty18
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Where abouts are you based? I was part of a discussion with a trained radical surgeon in the UK this week and someone asked this question (why can't someone who's deemed inoperable after 3-4 chemo sessions have 2 more) and she said it was not normal practice, it's something that isn't done?
I had my spleen removed as the Cancer was on the surface of my spleen but not in it. I was diagnosed Stage 4B because it was on my Abdominal wall. Otherwise I would've probably been 3C.
I would ask for more discussions and perhaps ask for a 2nd opinion as this seems to be a bit out of the norm? That's from my experience though, maybe the other ladies on here know something different as I'm still fairly new to this.
Thank you for your reply, we are based in Scotland. My mums CA 125 was normal after 3 sessions so I wondered why surgery didn’t go ahead at that point. However, I think there is a back log for surgery so I wondered if this was what was affecting it. She has her last session of chemo on Tuesday and then another CT scan and a then hopefully we will find out a date for surgery 🤞🏻 Her cancer is on her omentum, bowel, spleen and gall bladder.
Thank you for the positive encouragement, I need all the strength I can get at the moment, it’s a terrifying time X
I too remember being terrified, I found the support line so helpful for me. Maybe give them a try if you're struggling? They are also great at sharing their knowledge.
The aim of the surgery will be to remove all visible signs of disease so perhaps because of how the cancer had spread the team felt this was the better option. I've seen a lady here has responded to say she has 6 rounds first which is hopeful and just goes to show every area is different in their treatment!
Your Mum's response to Chemo is really encouraging!
I had my bowel resected (no bag), Spleen removed (Disease on the surface but not inside), Diaphragm and Peritoneum stripped as well as the usual reproductive organs and Omentum.
Hope your Mum's 4th chemo goes ok and the CT scan is positive 🤞🏼 xx
Your Mum’s team may have seen that the way the cancer is affecting other organs means that it would be safer to wait until the chemo has dealt with it before operating. They will keep this under review. I had a great response to chemo and got my op after round 4.
They will do the best thing for your Mum based on the results they have.
I was stage 4 at diagnosis…this year I will be an 8 year survivor and I am not finished yet. There’s lots of hope and lots of new treatment coming through. Chin up, deal with what’s in front of you and give your Mum lots of encouragement xx
Thank you so much for your positive story, it really has given me lots of hope! My mums CA 125 was within normal range after 3 sessions of chemo so I wondered why surgery didn’t go ahead at that point. However, I think there seems to be a back log for surgery in Scotland at the moment so I wonder if this is why.
Hi, not sure about why the change in chemo sessions but my gall bladder and spleen were removed along with all reproductive organs and I understood this was to remove anything non essential that could become cancerous.Hope all goes well for you and your Mum x
Grade 4a, I had 3 chemo, then assessed for surgery. I had 3 more (i.e. 6 in total) before being reassessed and surgery taking place in Jan 2022 when I had a great outcome and ended up NED. I had a further 2 chemo post op (8 in all) and now I am approaching my last Avastin for maintenance. Treated at Churchill, Oxford but op in St Charlottes, Hammersmith.
Hi, I was diagnosed Stage 4 grade a with HGSC in Augustc2021. I also had ascites which was effecting my breathing. I too was warned about my spleen, gall bladder and bowel. I started chemo in October2021 and had 6 rounds of chemo, yes 6, and then had radical debulking surgery in March 2022. I had my surgery at Nottingham City (am in Lincolnshire) and following surgery I had two more rounds of chemo. (Carbo/plan),. It’s not the norm but it worked and I am now on Niraparib a parp inhibitor and in remission.
It turned out one of the the tumours was on my bowel and omentum
One thing Nott City did pre my surgery, they suggested a laparoscopy so they could check the spread of the cancer.
I was told by my oncologist, that although it was not normal practice to have 6 before surgery, it had really worked for me. Ascites gone, tumours shrunk, liver, bowel and lymph nodes clear, CA125 score is 5.
Please ask more questions but the team dealing with her may be thinking that this is the best way to deal with the cancer on her organs prior to surgery.
I hope this helps you …and I wish the very best for your mum. It’s a very frightening and worrying time but I am sure that her team will be doing the very very best for her.
Hi. I was diagnosed during the Covid epidemic and had six cycles of chemo before surgery because the shortage of critical care beds caused delays. In fact I had what was described as a near perfect response to the chemo so despite being 3C in the March by the time.of the op in October most of the visible evidence of the cancer had gone. There was still a need to remove Omentum, appendix and some lymph nodes during my ultra radical cytoreduction surgery but the bowel disease had disappeared. I have primary peritoneal cancer so ovaries etc were healthy but removed anyway. Then I had two more cycles of chemo and am now in remission a further year on, taking Niraparib. I would not worry unduly about the extra chemotherapy.
I am a 17 years Survivor after fourth stage HGSC. I believe I had five or six rounds before my surgery but it was a long time ago. I was an operating room nurse at the time. My thoughts to you are to believe that the people looking after your Mom have her best interests in mind. They must believe that she is well enough to withstand that many treatments and go through the surgery. I take that as a very positive thing There is no fast answer to anyone's outcome. Everyone reacts differently to treatment and has a totally different prognosis. The staging of this cancer is done for type of treatment not survival. There are people who do not survive stage 1 and those who survive stage 4.It sounds like she is in good hands so keep up positive thoughts and enjoy everyday with her.
When I was diagnosed I was given a maximum of two years by an oncologist. Since that time I have lost many many friends from so many different things and here I am still enjoying life.
yes, had that diagnosis too. I had 6rounds of chemo, debulking surgery, total hysterectomy, and a lesion lazered off the dome of my liver and some on my diaphragm. They thought about taking the spleen but it was healthy so they let it be. I will have 3 more chemo then done. They said remission, not cure but I will take it! Can always pray for cure!
Someone said to me last year to trust in the team and take each step at a time. They deal with this on a daily basis. I had five chemo before the ultra radical cytoreductive surgery but that was due to blood clots developing , then I had three chemo after surgery. Having six pre surgery does seem quite common. There is so much to set up for these ops - critical care bed must be available, maybe three teams of surgeons. With me, it wasn’t obvious the extent and I had my first op, mass removed and complete exploratory op whilst there, the chemo and surgery. I know they said five or six before second op in the end as they had to fit me in! I’m in awe of their work.
I was diagnosed stage4, I had 3 chemo, then assessed for surgery, they said there was no progress from chemo at the time, and I still had severe ascites (having 5 litres drained every 3-4 weeks at the time). I had 3 more (i.e. 6 in total) before being reassessed and surgery taking place in June2021. Surgeon said I was NED going into surgery annd yet my CA125 was still over 200 (started out at 16,080😬 upon diagnosis and dropped 40% or more each chemo treatment).
I did not do any further chemo after surgery but have been on Naraparib since Sept 2021 and CA125 has remained at 20-26 for the past 16 months and I feel very well in general.
My oncologist advised they don’t see any positive results from additional chemo after surgery (this is based on my results and experience of course).
Each of us has the same cause for treatment, but we all may have a different journey based our individual results, side affects, progress, etc and of course our oncologists experience will affect treatment I’m sure. But all in all, I think the medical staff do what they feel is the best option for each individual based on the information they have. 🥰
Hi, I was diagnosed stage 4 serious at nottingham City hospital had 6 rounds of chemo before ultra radical surgery removed spleen and gall bladder, also full hysterectomy, diaghram work, liver repair, bowel resection x2 and omentum also appendix for good measure 😄 then 3 more chemos and have been on olaparib for nearly 2 years NED so far and feeling well.so, as everyone has said everyone is different, ask questions but trust your team they want a positive outcome. Good luck to your mum. Look after yourself too.
Hi - my Mum is also onto her 5th chemo now before surgery. She lives near Edinburgh so that is her treatment centre. They said she didn't show enough response to chemo after 3 sessions and are now also giving her Avastin. They will re-assess her soon for surgery again, although with her being in her eighties the prospect of that too is quite scary! The chemo itself take its toll so we just hope that she will be fit enough for it when the time comes.
I think that it is hard getting all the specialists together for the surgery but overall I would say her treatment so far has been based on her needs rather than lack of resources.
Thanks to everyone who has replied so far. We have been told today that my mums markers are down to 16 after her 5th Chemo, however there is a waiting list for surgery and that if surgery isn’t able to go ahead and the cancer starts to grow back in the meantime while we wait on a surgery date she will then be classed as inoperable. They have advised that another option is to go down the private route and for surgery that will cost £25000-£30000. It’s absolutely devastating to be in this position after how much she has suffered to get this far. I wonder if anyone else has found themselves in this position? My mums final chemo session is tomorrow and we are waiting currently waiting on the oncologists secretary to get back to us once they find out how far down the waiting list for surgery my mum is.
I just went through all of that. Same diagnosis, 6 rounds of chemo, surgery for debulking, lesion on my liver they lazered off, total hysterectomy. The were thinking of removing the speed but it was good so they left it. Now 3 more rounds of chemo
I have the same thing as your mom. Not sure when her surgery is scheduled, I had 6 rounds of chemo before my surgery. Dr was pretty sure she would remove the spleen and even part of my colon but once in she saw she didn't have to! So stay positive and strong in thought. I try to stay really strong for the love of family. Praying for your mom..
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