Hello All
We've had a request from a CNS in Croydon to pass a question on to you. She is providing a talk to interventional radiologists, who you may have some across if you've had any ultrasound guided procedures or had your ascites drained, and she wanted to know if there were any particular comments or experiences you'd like her to mention?
Best wishes
Anna
Ovacome Service Manager
I had two drains due to ascites and a biopsy which were ultrasound guided when I was first taken Ill.
Not sure who carried out the procedure as no one introduced themselves or indeed really spoke to me at all. The first drain I was just sent down from the ward on my own and had no idea what to expect. I was very unwell at the time. I was in pain and having difficulty breathing due to a pulmonary embolism which made lying flat on my back and lying still very uncomfortable . I was scared stiff but was offered no comfort or support. A nurse was in the room but she stayed well away from me chatting to a friend about her lunch during the procedure and only breaking off to brusquely tell me to keep still.
I felt just like a slab of meat.
Another great experience on my cancer journey.
Julia
Hi Julia,
I was really sad to read of your experiences, at such a vulnerable time.
Staff do need to realise that these are life-changing events and stay in our memories.
How are things now? What treatment are you going to have?
Sending much love xx ⛱☀️🌹
Hi Seasun
Thank you for kind thoughts.
You are so right about these events staying in our memories. It is actually back in 2014 when this happened and it had been lost in the sea of trauma (a much over used word) that was going on at that time and since. It was only this question that prompted me to to think about it again. I was surprised how vivid and emotional my memories still were after all this time.
At the time you just suck it up and get on with it and of course no one has ever asked me to reflect on it before. It certainly is not something that is foremost in my thoughts. It is well buried but it obviously still bothers me to some degree. If future practice can be improved for other women coming along then I am happy to dig it up.
Thanks again
Juliax
Hi Anna,
Like Julia, I had a drain inserted for ascites (one) & a biopsy, both guided by USS, after diagnosis. Unlike Julia, I felt the procedures were ok. I was very nervous & unwell, but was given sedation for the biopsy (fentanyl). One of the Gynae Oncologists (who later did my debulking surgery) carried out the drain insertion. It hurt, especially the suturing, but a very kind nurse held my hand & distracted me. The Consultant was quiet & caring.
I think the main thing to say at this stage is that all of us were very ill & it SO matters how we’re treated for these procedures. Linda
Hello Anna,
Hope you are well.
I had a hystereoscopy immediately after an ultrasound where ascietes was also found.It was all pretty clinical to say the least.That was 12 months ago and I ended up with a total hysterectomy and bso and staged 1a in right ovary.
I now found myself back in the system with chronic pelvic pain and fluid build up which has been diagnosed as a bulky uterus with fibroids by radiology and endometriosis ....it’s been recommended I have a total hysterectomy and removal of ovaries!!!!How could they get it so wrong?!I now have a second mri with contrast dye to check for areas of concern....
I do appreciate the NHS is stretched to the max but,I wish they’d read the previous notes sometimes...we are people with feelings not just MRN numbers!!Consultant’s secretary said it was simply a typing error!!
Thanks so much for letting me rant!Do hope I’ve not misunderstood your request.
Sincerely appreciate this amazing charity and all the work you do.
Best wishes Clare
I had a horrendous experience in ultrasound, was sent to look at having a drain inserted as onc thought I had ascites, I was admitted due to being so unwell post surgery and just prior to chemo. The sonographer was awful she started scanning me and then stated there was nothing she could do for me as tumours were in my bowel and liver!!! This was devastating news to me as I was on my own! She then pointed at my stoma and asked if it was working, I said yes and she just responded well I’m surprised! I’ve never felt so upset and frightened! She then sat me in the waiting room to wait for a porter to take me back to the ward! My world was in pieces I was terrified I thought I was dying in a week so rang my sister to come to the hospital! The ward staff were horrified I’d been left so upset and devastated! They called the onc who luckily had my earlier CT results and reassured me the tumour was in the abdominal wall and not in my bowls or liver so not only had the sonographer got the worse bedside manner she had actually got it totally wrong and had devastated me for no reason!! I’d advise that whatever they may see or think they see, whilst a patient is alone and vulnerable please do not give them bad news try and deflect any questions and let people skilled in delivering bad news do that if indeed it is bad news!
I was scanned at my local hospital , the radiographer and nurse were great.They explained every detail of the procedure and were most caring .My treatments including draining , biopsy and chemo are done at a different local hospital that specialises in cancer care .For the draining I had a local anaesthetic and didn’t feel anything .The Doctor who placed the drain used my CT scan and previous ultrasound pictures to guide him to the fluid pocket .The drain was kept in for 24 hours , draining 10 litres in total , stopping every two hours for checks and breaks .The only problem I had was the amount of fluid that came away after the drain was taken out , soaked me and the hospital bed.Next was the biopsy , I only had a local anaesthetic and didn’t feel anything , again the Doctor and nurse explained everything as I was agitated for this procedure .Only the CT scan and ultrasound pictures were used as a guide .I feel I was treated quickly and with dignity and respect , I definitely was not made to feel I was a slab of meat .I am a NHS patient . Julia x
I'm interested in this subject too as I'm a patient rep on an Expert Reference Group for Radiology in the collaborative group of which my hospital is a part (don't ask how this honour was thrust upon me).
I think my only experience of this was having a port inserted, guided by USS by the central venous team, and that was a very good experience.
Was this because they operate out of the cancer centre? It was certainly a pleasanter experience than the previous time when it was done in the main hospital. There was nothing wrong with it as such but it was just a much less warm and empathetic experience than the second time.
I too had a drain and biopsy at my local hospital guided by ultrasound. The nurse and sonographer were absolutely lovely and really helped me as I was terrified. The biopsies were painful though. I only had some spray (lignacane??) around the insertion point - could have done with something else stronger. They offered to bring me back another time and give me anaesethic but as I was there and just wanted it over, I carried on with the nurse holding my feet down. It was painful.
I have had 2 temporary drains and was anxious about both of them. What helped me both times was the person doing the procedure explaining what would happen and telling me when it was nearly over. Also being told that I could have pain killer if necessary (it was). I then had a pleurex drain fitted. It was done at the last minite, so my experince may not have been usual, but
I was left alone in a little room for a long time (over an hour) in a hospital gown, with no indication of how long I would have to wait. I wondered they had forgotten me. I would have liked someone to have given me information about the likely wait/delay. Then at least I could have trid to settle and read my book. The actual procedure was much more painful than I expected, and I was helped by a nurse who stood by me and I held his hand and squeezed it as tight as possible. I did get a sense that the 2 interventional radiologists doing the procedure were a bit blase about the pain, telling me it would be fine, which it wasn't for me. Again I found it helpful when they told me the procedure was nearly over.
I had a drain put in when I was first diagnosed and in a very poor condition.
My abdomen was huge and growing. After 18 days in hospital and having my waist measured daily, I was finally sent to Radiology were I wasn’t spoken to at all. I was just given instructions and my abdomen was marked with a pen. After that, I was sent back to the ward.
I have had many operations on my abdomen. I had had large fibroids and endometriosis so I’d previously had a hysterectomy. Added to that I had scar tissue.
So my procedure wasn’t exactly guided as the marking of my abdomen and the insertion of the needle were done in separate locations.
A junior doctor did the procedure guided by a mentor on the ward.
The needle hit the wrong bits inside as it was inserted causing much pain. I was afraid of dying there and then. That’s what makes me very afraid of ascites.
I’m told that when ascites comes back, I’ll be drained and given hormone treatment. My doctor thinks draining is fine and treats it as if it’s routine.
Having ascites in itself is horrendous especially when there are many pockets within the abdomen causing pressure and pain. And having it drained blind is a very scary experience. I wonder if this is normal practice?
Hi Tina, as far as I understand, the drain & biopsy should (always) be done under ultrasound guidance - otherwise how do they know where they are going? You can’t rely on past scans because things move! I think ascites is very frightening, as in stages 3/4 of OC, it seems to build up so quickly! And I think with ascites present, you are & feel very ‘unwell’. The body is trying to make sense of/cope with the tumour cells....which is hard work for all the organs. We are very prone to blood clots at this stage too.
I’ve asked several doctors what CAUSES the ascites. They say it could be because the tumour irritates the body. It could be because the electrolytes in the blood (like calcium & sodium) are out of kilter. It could be because the tumour/s are pressing on the lymph nodes and the fluid can’t drain away...
I hope none of us have this again - but if we do, make sure it is under ultrasound guidance by an experienced person (mine was by a Consultant).
BW, Linda xx
I had a USS guided biopsy of my peritoneum. NEVER AGAIN
The consultant did not introduce himself and the procedure was probably the worse pain I've had on my "journey".
I had to introduce myself to him, he spoke to my husband on the way out though!!!
he injected so much local into my abdomen well over 40 mls and the tru-cut biopsy was really painful.
The nurses were fabulous I may add, but sadly he managed to get a biopsy of my bowel and I ended up having a laparoscopy for diagnosis, which was far better
I think you are very venerable at these procedures lying still, not being able to see anything at a stage of high anxiety as the results of these such procedures are life changing.
The interventional radiology has come on leaps and bounds in recent years but some procedures like mine are probably not worth attempting.
I am in the U.S. but still, my story is in the sensitivity area too. I had to meet with the Intervention radiologist before the procedure and she sat there telling my husband and me that she was late to my appt because she is buying a condo and just how horrible people can be--and what a nightmare she was in---this went on till I interrupted her to ask if we could talk about my procedure. Then, the first thing out of her mouth when I said that was "you're here for a tumor biopsy--what are we biopsing?" I was there for an IVC filter!!
How about reading my chart before you say hello? Hmmmm.
I am also in the U.S. and just had a biopsy with CT scan assist this past week. I found the procedure itself to be painless and easy, which was very nice to know! The assistants and residents who worked with me were pleasant and caring. Very thoughtful and had clear, concise instructions for me. I had similar experience to many above in that the radiologist
performing the procedure did not introduce himself nor explain what he was doing. Given how well I tolerated the procedure, I wasn't upset....but just thought it weird and rude that someone would enter a room and start touching a body without first introducing themselves.
Dear All
Thank you so much for sharing your experiences. This will, I'm sure, be really valuable to the CNS when giving her talk.
I am so very sorry to hear of the upsetting and traumatic experiences some of you have had.
I certainly hope that the training such as the CNS talk will help to limit this in future.
I will also mention it to our Volunteer Manager, who organises the Survivors Teaching Students programme which includes talks to radiologists.
Thank you again for taking the time to share this feedback.
Best wishes
Anna
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