Hi there, I am early in my diagnosis and feel the need to investigate all the issues I'm most concerned about.
My question is......how many of you have had a recurrence after a surgical spill? What time had passed? Or are there any of you without recurrence even though your tumor cells were spilled during surgery?
During my surgery for endometriosis, my surgeon openly drained my tumor as he thought it was a cyst. When he got the pathology report back it was a shock.
I then had surgery to remove the offending ovary and omentum. I was expecting that my oncologist would perform washing's, especially due to the spillage but my CNS said it was too late to do a wash and that a wash can only be done at the time of the actual spillage.......is this right?
I now feel worried about these rogue cells swishing around inside my pelvis unchecked.
I had LMP tumor, stage 1. My pathology report is in the post to me.
I would appreciate your thoughts x
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Have you been offered chemo?.I was diagnosed as 1c,but,had ascites and was drained for 2 weeks.There were cancer cells in the ascites,which are a liquid in the stomach area.Even though I had a radical hysterectomy and tumour removal I had 6 months chemo to mop up any cells that had escaped to other parts.
Hi Carole, chemo is not offered for my tumor type. I am awaiting my pathology report but my CNS told me beforehand that a wash would not be done. I was told we just had to watch and wait to see if anymore tumors grow.
I have a follow up scan in May and an appointment with my oncologist the same day.
The prognosis for my tumor type is good .... but none of us are statistics and so I feel it's up to me to gather as much information as possible for my own benefit. There's a 30% chance of recurrence as I kept an ovary, the risk increases due to spillage and endometriosis. So I feel I have to be cautious!
I have got to place my trust in scans....the same scans that didn't identify my tumor in the first instance. Hopefully now they know .....they will be more suspicious of any type of growth.
Caution is always good! We always have to put ourselves in the hands of the experts and I am still here after 2 years finishing chemo,so,it sounds like you are in good hands.
There is always a lady to offer better advice than me and we are a friendly bunch,so contact us whenever you feel you want to,
Thank you Carole....I am new to the group but finding it very friendly and helpful x
I hope you are as good as you can be yourself x
One of mine burst during surgery. It led to me being staged as 1c instead of 1b. I've had several recurrences since then. Recurrence is the norm rather than the exception with OC and so it's difficult to pin down causes for it. Apart from invisible cells....
Hi there . Your situation is very similar to mine. Although my cyst ruptured before surgery and the fluid was probably left floating for a few days beforw it was removed.
I understand your concern about risk of recurrence but i think they are pretty thorough when they remove the fluid.
I had washings done later in a second operation so I don't agree with your CNS nurse.
However, for your peace of mind i believe that after they remove the fluid, they wash the area out anyway.
What is LMP, may i ask? I wasn't familiar with the term. What are the next steps for you? I was recommended chemo due to the free floating fluid - but have been told it will kill the remaining ovary and so i am now wondering why i went to lengths to get only the one ovary removed. So im considering not having the chemo. However , i have other aches and pains which need to be investigated first.
Hi....after the rupture it was approx 10 weeks until I had the surgery with an oncologist. She said she could see no visible sign of disease and my omentum came back clear. This was great news but after that appointment, my head started filling with a whirlwind of questions .
My next steps are watch and wait. I have my first scan after surgery in May.
LMP = low malignant potential
It is a slow growing tumor so chemotherapy has found not to be effective for this type.
Also which type of cell do you have ? And what grade was it?
Mine was 1C , endometriod adenocarcinoma , grade 1
As the cyst spilled during surgery, they ahould have sent the fluid away to be tested. so best to get the results. As if the fluid was negative , the risk is far less.
Hi....cell type is seromucinous, I am stage 1....1c I think because of the spillage. I have an LMP tumor....low malignant potential.
My pathology report may arrive today hopefully ....so I can read in more detail!
They did not mention testing any fluid. My oncologist says very little and is really led by my questions. That's another reason why I am trying to gather information.....I need to know what to ask! For example, I have no idea what my CA125 numbers are and everyone on here seems to know.
Thanks for your reply.....I hope treatment is working for you x
Ok - the positive news is that it sounds like it was caught very early and that is excellent for you.
I had exactly the same issue as you - where the oncologist is led by my questions. When meeting the surgeon and the oncologist that administers the chemotherapy- both asked me "have you done your reading?" Within minutes of our first meeting. It then occurred to me that they would not be taking any time out to explain anything in depth and they assumed that i knew what is the general course of events and areas of focus. I didn't know anything, so i had to research a lot and that contributed immensely to my stress levels.
Yes, ask about the CA 125 level. If they haven't taken it in a while, insist on having it done. In some women it does not prove useful but there is no harm in trying to gather as many facts as you can.
I have also been staged as an indicative 1C. This is because without a full hysterectomy you can never be fully staged.
Did the oncologist sample your lymph nodes? Ask to meet the oncologist and go through the pathology results in detail. You are entitled to this time and they must explain it to you.
Did the oncologist take lymph node samples and peritoneal washings - ask anout this too. Also the fluid which leaked feom your ovary can be tested to see if it had cancer cells in it. They will have removed that fluid during the surgery.
Ask about why chemotherapy is not affective on your type of cancer cell. I was also told this at the first hospital i went to - but when I transferred to a cancer specialist hospital, they told me that chemotherapy is very effective. So be pushy and ask for explanations. Dont be afraid to challenge.
When oncologists make statements- they often dont follow up with any explanation. Sometimes they offer opinions, which they must support with facts or research. So don't be afraid to ask and do not leave that room until you have the answers you need. If you don't get the answers, make it clear to them that you don't feel that you have been supported and you need more information.
you can also ask the oncologist to give you the statistics about women who have 1C LMP seromucinous and the general rate of reoccurrence. They have access to all the stats and hospital data so don't let them fob you off with "you are not a stat" .
Even though you are not a stat, you are allowed to do your research and have access to any stats you want.
Thanks for your reply... I had a more detailed conversation with my CNS rather than my oncologist. She told me they would not be doing any washing's or biopsies..... the only testing would be the removed ovary and the omentum.
My pathology report has still not arrived so I need to see that before I challenge them.
The appointment after my surgery was brief...my mind went completely blank when she told me she found no evidence of disease spreading. I didn't ask questions and she didn't offer any detail.
I am not due to see anyone until May now.
Your reply is very helpful thanks.....I will go armed at my next appointment x
I would be inclined to ask for a second opinion..from the best teaching hospital near you.....but also remember there are many people on this site who do not want to know all the stats.
People usually specialise in oncology because they really want to help others but I have been on this site long enough to know that there are many opinions as to how best to do this. One oncologist I see said some people only want her to know their CA125's though she was quite happy to give the information to them.
Opinions also differ about whether too many scans...like x rays....can do more harm than good.
Everybody's personality is different and I still am not 100 per cent clear about the complete purpose of 'washings'. Suggest you ask(!)
Am also a great believer in following your instinct....if you feel you want to know every detail you probably do....but others are very different.
Best of luck as, hopefully, you continue enjoying your life...very many on this site are totally inspirational! Chris xx
When I saw my oncologist after the op I asked about washings. The CNS said we don't do that here (Dudley) as we do not find it useful!!!
I resisted saying bo###### but now wish I had. I suspect it was because they were expecting to remove fibroids instead of mucinous OC. I was also the last op of the day so maybe time was a factor but then I am cynical. As I may have rogue cells roving I chose to have chemo to get the bar s tards if possible even though the oncologist pushed quite strongly for a watch and wait for symptoms even though I had no symptoms before diagnosis.
Hi Fay..... it seems to differ for different people doesn't it. I am in London myself. My diagnosis was a shock too.....to me obviously, but also my endometriosis team. I had already had two laparoscopies for the endometriosis before anything suspicious came back from the lab.
This is why I need to be on the ball.....I don't want anything missed in future!
Chemotherapy is not effective for LMPs as they are slow growing. I am 'lucky' . My tumor is polite see....it mostly let's you catch it stage 1.
Well done for taking control of your treatment. I think we have no choice but to trust our oncologists but I also think we have to be informed in the decision making process.
I had to insist I kept an ovary to avoid surgical menopause. My oncologist was not happy and gave me a scary lecture about what risks I was taking. After my surgery, she said she thinks I was probably right as she looked at the remaining ovary, and there was no visual evidence for removal. I had given her permission to take it if it looked in any way suspicious.
I have taken from this forum that we are all on journey and no one is sure of the next stop, but if we look out of the window once in a while to take in the scenery, we may escape the fear within the carriage x
Hi my oc is not supposed to respond well either - can be 70 % resistant and it is grade 1 so double whammy on the chemo front. Like yours again it is usually diagnosed stage 1. I got myself referred to the Marsden and the oncologist agreed with me re chemo so my oncologist in Dudley agreed the chemo. I knew what I wanted so was "strong" in my dealings with the oncologists.best wishes Fay
This sort acts like bowel cancer (there are certain indicators which "suggest" that the origin is ovary or bowel- my indicators were that it was ovary in origin. Because it acts like bowel they do a CEA test and a CA19-9 ( usually used for bowel cancer) as they are better indicators for this type of cancer. ( I would ask for a HER4 but they do not really do this test in this country) Also some areas like Dublin and the top cancer hospital in the US- MD Anderson-use a bowel cancer regime for my type as first line treatment.
For me stage 1 C ( C as tumour on outside of ovary) grade 1.
I certainly agree before this happened I had no idea at all of the number of different types, and it has been a very sharp learning curve.
I am seromucinous. I am actually waiting for a call back from my CNS and I have a GP appointment tomorrow. I am having back pain and bloating issues which are not subsiding. I am getting nausea too and have had to take strong pain relief if I've wanted to leave the house. I am 6.5 weeks post op and do not know if this is all normal or an indication of something else.
It hurts after I eat too. I was told no need to look at my apendix as not linked to seromucinous. I have previously had an endoscopy and a colonoscopy which were clear but I can't help feeling troubled by my bowel symptoms
I know that we are all different but.... surely to be in that much pain after over 6 weeks since the op is not good. I only needed paracetamol for 5 days and was back at work after 4 weeks. Maybe my surgeon did not do too much messing with what innards I have left. Maybe they had to move a lot of stuff about during the op for you which can cause more discomfort. They may have had difficulty in getting the tumour from a difficult place. So many ifs and buts.
There is an American website called hystersisters for women who have had hysterectomies for whatever reason. might be worth a look for you.
I've just spoken to my CNS nurse and she said get the doctor to examine me tomorrow and call them back if perhaps I need a scan to see what's going on.
I did have two surgeries one after the other and my endometriosis surgery was major and included removing it from my bowel plus unsticking my womb from my bowel. So a lot to consider really!
Hi....that's good to hear! I hope you continue problem free.
I also see you say 3.5 years ago..... I take it you still find comfort in this group even though you are clear at present. I think the emotional side of a cancer diagnosis is clearly long lasting.
Can I ask...are you still anxious or does it subside? I am very early in my diagnosis and feel quite panicked, no matter how much I am told I am 'lucky' x
It's always there lurking but so are all the things there are to worry about. But it never occurred to me to be concerned about whether the trees in my garden were sick and I came down one morning to find my beautiful acacia lying across the lawn. (Not sure what the lesson is there except we can't worry about everything!)
I had a scan last week and obviously it all increased around that even though I have no symptoms and as far as medics are concerned I am still at risk of recurrence... So I guess that's why I stay with this forum as I'm still part of it. Hope that doesn't sound too negative.
It's sounds in no way negative and I like your tree analogy lol
I just hope as time passes I will have a clearer mind. I have done lots to try and be positive....changed my hair, bought new clothes, gone swimming, tried to have a clear out...etc
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Mucinous. 
Recurrences
Recurrence
Recurrence in Peritoneum
Recurrence :(
