Help needed please with understanding Mum’s CT report

[SusanC]

Mum (72) diagnosed in 2010 had Carboplatin 4 rounds then hysterectomy in Feb 2011, 3 more rounds of chemo. Within 3 months she reoccurred and was given Taxol, round 2 she had a severe reaction and was put onto Caelyx, after 4 rounds this was stopped as she had hand and foot syndrome and ct showed no real change. In March of this year she had a complete bowel obstruction and was operated on and ended up with an ileostomy. After the op she was told to go away and recuperate and that chemo would be offered as and when symptoms returned. An appointment and CT date was given for 3 months but Mum’s symptoms started after 2 months so the scan was brought forward, her onc was away so she did not get the results for another month. During this time she started vomiting and has only eaten small amounts of food for the last 7 weeks, had chemo Carb/Gem a month ago. Was admitted to hospital just over a week ago for the vomiting. 3 days on a drip to give the bowel a break, sent home and told to have only liquid food. She was unable to have her chemo that week but had it yesterday, still being sick not from the chemo though.

Tried getting to the bottom of where the obstruction is this time but to no avail, Can anyone advise on the CT result below,

Small amount of ascites, not evident on previous scan, Thickening of the undersurface right hemidiaphragm as well as plague like tissue on the surface of the liver, suspicious of peritoneal involvement. Focal low density area in the liver (3.8cm) close to the falciform ligament, larger than previous scan 1st May 2012, Small nodular densities have appeared in the fat of the supracolic omentum, not present on previous scan. Within the pelvis a poorly defined soft tissue mass 5 x 4 cm, this lies to the right of the midline and involves the surface of the number of loops of small bowel which appear tethered together and show variability in calibre, indicative of peritoneal involvement.

Any help would be so appreciated

Sue

[wendydee]

Your poor Mum, Sue. And the rest if the family too.

I am not qualified or able to interpret medical language. There is lots of advice in the fact sheets on the Ovacome website. I think you have to leave it to the experts. On Monday, Ruth will be back on the helpline. It's 08453710554. Ask her, she is a nurse and can explain things better than us patients can. Sorry this is no help, but just wanted to say beware of misinterpreting the report. Your CNS at the hospital may be able to you more gelp too, they are used to putting the reports in a more understandable form. Even if things have been rotten for your Mum recently, there are other treatments and approaches to what sounds like a complex problem. My best wishes and a hug. I hope you get some clarification soon.

Love Wendy xx

[SusanC]

Wendy,

Thank you for your reply, Mum has never had a CNS and only this week she was refered to Paliative care and saw a MacMillan nurse. Her onc is next to useless she never gives a straight answer to any questions. The MacMillan nurse was very nice but Mum has lacked support from Basingstoke hospital. I know things do not look good and the surgeons will not operate anymore all they say is she needs chemo, but Mum is constantly being sick not from the chemo she just cannot keep anything down.

I think this treatment maybe the last they offer her as she seems to react to all the other available options. Her weight has gone from 84kg to 74,4kg in just over 6 weeks. Her stoma stops working for days on end then all of a sudden starts working again.

All the best to you.

Sue

[Hidden]

Hi Sue,

I am so sorry about the confusing results for your mum...it must be such a worry for you..I am sorry that I can't help you with this...is it possible to make an appointment with her oncologist to discuss this in further detail ?...I did this with my oncologist as he doesn't explain things very well..I wrote every question I needed an answer for... and didn't budge untill he explained this to me..I had things on my scan that I needed explaining... I started off by thanking him for seeing me.. as I know his time is valuable.. and then I bombarded him with my questions untill I was satisfied...it's your mum's life we are talking about and she has every right to do this...perhaps you could get someone strong to accompany her..so she won't be fobbed off...failing this get a second opinion ..my thoughts are with you...best wishes

love x G x

[murdina]

Hi Sue

Scan shows Cancer has moved to the Liver and Peritoneum lining that covers the abdominal and Pelvic Wall. The Soft Tissue Mass could be a Sarcoma Tumour not Gynaecological. You are entitled to ask for a second opinion as there are different ways to give the chemo,intraperitoneal chemotherapy for sarcomaosis direct into the Pelvic Cavity. You need to remind your Oncologist she has a duty of care to you and your mother regardless of age and funding. Barts Hospital London have a site advertising trials.

Why can't the sickness be better controlled, Palliative care nurses in Oncology should be able to help. The Doctor should explain the CT scan to you and your mother, do not understand the lack of care, Good Surgcal Practice states they must explain investigations and Scan in a way you can understand. Request and make an appointment with the Oncologist or another Oncologist as soon as possible.

Thinking about your mum, she deserves better treatment.

Regards Murdina x

[SusanC]

Murdina,

Thank you for your reply, Mum's oncologist has sort of made it clear that if Mum continues to be sick chemo will be stopped, she thinks it is the chemo causing the problem. But Mum was like this before the chemo started. In the last few days Mum has not been able to take fluids without vomitting, she was prescribed metacloprimide to help the transit of food go through quicker to the gut, but Mum seems to only be able to have food like soup and even that she can only mange a few spoonfuls before she says it just won't go down, then a matter of a few hours later she is being sick again. She has no energy at all and is so scared they will stop treatment if she say's to much. While she was in AAU the surgical team advised they would not operate again and that chemo was needed. Mum was told it could take months before she gets any effect from the chemo, it must have done some good as before her 1st round of chemo her CA125 was 4750 after round 1 was down to 1495. Her oncologist is only in the hospital on a Thursday so trying to get an appointment with her is very difficult. we tried asking questions last week but the hospital had lost Mums notes for the 2nd time. It is so frustrating trying to get answers from anyone at Basingstoke.

Take care

Sue

[RuthPOvacome]

Dear Sue

I am so sorry to hear of all the problems that you and your mum are experiencing. If you would like to give Ovacome a ring to discuss things further please feel free to do so. I am in the office until 4 today and will be in the office tomorrow. 08453710554 or 02072996650

Best Wishes

Ruth