A diagnostic tool only as good as the operative?

[Irene]

I think with the multitude of new tools out there to assist with diagnosis it is easy to feel up beat and confident that these will always provide useful information.

However I'm not sure sure. My recent experience disturbed me. After a successful recovery from stage II OC 17yrs ago I got on with my life. During this period other health issues rose up to give me a nip but nothing I couldn't manage. More recently I've felt very unwell so my Gastro Prof organised a CT scan which showed a pelvic cyst.

I was promptly despatched to Gyny oncology and had various discussions with the doc. The concern was that the OC had returned (I had a subtotal hysterectomy and removal of ovaries). Good news was my CA125 was low.

This whole episode was worrying, although I still didn't feel that this cyst was the cause of my symptoms which mainly consisted of total exhaustion. First step now was that I had a trans vag u/sound to view and measure the cyst.

Next stage was to go for an MRI. I couldn't fault the hospital for thoroughness and speed. This showed the cyst, small but possibly involved with the remnant of cervix, bladder and possibly the bowel. Scary stuff. There was talk of a FNA via the vagina with the risk of cancerous cells dropping into the pelvis. I wasn't keen on that! We decided on a wait and see for a couple of weeks with another trans vag to see if the cyst had increased in size. This procedure confirmed the first trans vag but also showed a 2nd cyst in the remnant of cervix though this was felt to be harmless.

There was talk of surgery but with the possibility that the bowel could be involved I was then sent for a sigmoidoscopy to see if this was the case.

Back for a second trans vag u/sound; the good news was there was no real increase in size

but the cyst did look suspicious, had its own blood supply and more alarmingly had solid areas.

Off then to a Centre of Excellence. Shock and awe. What a difference. Not just the smart building, swish colour schemes and overall newness. It was the attitude of staff. From the people on the main doors to the Consultant. Everyone I met was polite, courteous and welcoming.

They were keen to carry out their own trans vag prior to my meeting the Consultant surgeon to discuss options. This was done on the spot by an female doctor who had a very confident manner and felt like a safe pair of hands. She was extremely gentle; carried out the scan very carefully; turned the screen to share the images with me and said that it was looking good, the cyst was fluid and likely to have formed from a small pocket of fluid emerging the remnant of cervix. No blood supply and no solidity. Great news.

Doc then said that she wanted to just run this by the Consultant in the imaging unit so that he was happy with her findings. Along he popped, used the probe and had a look himself; again showed me on the screen and was clear that all was looking good. I did ask whether this type of cyst was a normal occurrence but was told it was not.

I then showed him the report from the trans vag scan that I'd had a week before. And although he didn't say anything negative he reaffirmed that his finding was the opposite.

Although I've scrunched all these event into this post they did of course take place over a period of months. A worrying period for myself and my family. Whilst I am of course pleased that I was investigated thoroughly some sleepless nights and deep discussions were had, based on the original trans vag findings. When I've mentioned to the docs that I felt the cysts were picked up by chance and weren't responsible for how unwell I've been feeling I suspect they felt I was in denial.

It's obviously not practical to go around asking a second opinion for every investigation you have BUT if my original hospital were still carrying out ops I would have had one based on their findings, especially the trans vag scan. It was very lucky for me that they have stopped the OC cancer operations and elected to send patients to the Centre of Excellence or I'd no doubt have my surgery date planned in!

I'm not quite done as the C of Excellence is now requesting my previous CT and MRI scans. They'll review them in one of their group mtgs and I then have a follow up appt to hear their views. Needless to say I feel a lot more positive than I did a week ago.

[wendydee]

Whew! What a lot of emotions you must have gone through. What a relief that you were referred to the Centre if Excellence. Thank goodness these Centres are around. I am sorry you have had all the worry ..... Poor you. I am glad the new diagnosis is more positive and hope you are getting the answers you need about the original unwell and exhausted way you were feeling.

Love Wendy xx

[Irene in reply to wendydee]

Thank you wendydee

[Hidden]

I'm so glad you have eventually had your problems diagnosed and appropriate treatment can be instigated.

The Centres of Excellence model can be a good one - but locally to me (a huge rural catchment area) the hospital that was resourced and backed to become the CofE (and I smile at the inadvertent pun), was so equipped purely because of a political decision about the truly excellent hospital having already been allocated the CofE in a different surgical area. Sadly, the hospital is pretty notorious - and in a geographically inaccessible place - and I hear that the wonderful new gynae facilities are now being used by a different department. As is often the case; what works in a densely populated urban area, doesn't work in a rural, dispersed area.

As is always the case, treatment for hard to diagnose conditions is dependent upon finding the experienced and resourced staff - and they are not always only those in the CofEs.

Wishing you an effective treatment and a long and happy future.

Isadora.

[Whippit]

How I wish we had CoEs for people living in Wales. Perhaps we do? Your blog was really interesting Irene and reminded me of my friend's experience.

She was having surgery for a hernia when the surgeon discovered cancer in her abdomen. Scans were taken in the specialist hospital in Cardiff. The condition was thought to be either abdominal or gynaecological and it was considered to be fatal as it was widespread. The oncologist couldn't give a name to the cancer and thought it wouldn't respond to chemotherapy. He tried 6 sessions of abdominal chemotherapy, and when that didn't work, 6 sessions of Carbo-Platin and Taxol for a gynaecological cancer. You can imagine how debilitating and terrifying it was.

My friend started to ask her oncologist about the hospital in Basingstoke and whether she might have a rare cancer called Pseudomyxoma Peritonei. The local oncologist poo-pooed the idea - even though she had a hernia, ascites, abdominal pain and the cancer was resistant to chemotherapy - four of the most obvious symptoms of this condition. She asked again, and then phoned Basingstoke to find out more. The oncologist in Cardiff said it was all mumbo-jumbo and told her she had an incurable cancer (even though he hadn't been able to identify what it was). He told her she had months to live and offered her a Macmillan Nurse. I will never forget that day. What can you say to a friend who is given that prognosis.

My friend referred herself to Basingstoke - rather fearful of offending the local oncologist. They took one look at the scans provided by the hospital in Cardiff and diagnosed it immediately. She had the Sugarbaker technique 4 weeks later - a matter of urgency as the cancer was developing at a great rate and they told her if the fluid in her abdomen turned solid she would be inoperable. My friend had a total hysterectomy, removal of the momentum, pancreas, appendix and spleen. What remained inside was stapled together as the sac which had contained the organs was removed. The operation was a huge success and she is now cancer-free with the expectation of a complete cure.

We were having coffee on Tuesday as it was the anniversary of her first trip to Basingstoke. Apparently I had been adamant she should try this route and it gave her confidence to seek an appointment. My friend never cried whilst all this terrible stuff was happening last year, but on Tuesday she broke down and sobbed. It just shows, we get through these dreadful times, we put on a brave face, but deep down inside the trauma doesn't go away.

I'd heartily recommend a visit to a CofE even if you live in a`remote area. I shall certainly be asking where ours is next time I go to our local hospital. My treatment wasn't even supervised by an Ovarian Cancer specialist. We owe it to ourselves to be vigilant and thorough because if we aren't it doesn't necessarily follow that our specialist advisers are.

xxxx

[Irene]

Whippit, my blood ran cold reading this. Absolutely shocking. Unfortunately I've already come to the conclusion that if you are a 'reasonably' person it's very difficult to make a stand to a medical professional as we are so worried about offending and being polite.

I had to accompany my daughter yesterday to see a Consultant Gynaecologist re her suspected endometriosis. These symptoms have gone on now for 3 yrs. The original Prof who saw her was recommended by me as I had a v good experience. He wisely thought that to save doing a view only lappy and then referring her to a surgeon who could remove any adhesions it would be best to pass he straight to that person and shorten the time factor.

That has been a bad decision. The new team are truly shocking. We finally, despite having visited the clinic 3 x this year and the referral being done in Feb, got to see this Gyny God yesterday. We are both experienced enough now and know our way round the medical world to remain calm. He was abrupt, gave no indication that he understood what we were saying to him and was intent on carrying out surgery to effectively 'diagnose' this condition.

Unfortunately my daughter is incapacitated at the moment due to a prolapsed disc so surgery isn't an option for the time being. She is also bleeding from the rectum and had read that an MRI is a very effective way of diagnosing endometriosis in this area. When she broached that she was told that the hospital didn't agree with that method and it wasn't an option. I then told him that we'd look at our options and likely take a 2nd opinion. That was well received I'm glad I had the strength to say that to him. I certainly wouldn't have done if I had been younger. As my daughter said 'I wouldn't trust him to cut a carrot, yet alone cut me'.

We are not obsessed with female health but having my previous history and a paternal grandmother who died of cervical cancer at a young age we are 'aware'. Now we have to go to the PCT to get access to a hospital of our choice, probably starting from scratch again. But, as we are not much further forward that we were 3 yrs ago it doesn't feel like we are losing much ground.

Please tell your friend that I am in awe of her courage to make the stand that she did. It must have taken all her reserves, especially when dealing with such an overwhelming health problem.

[Irene]

PS Can I ask how your friend managed to refer herself to the hospital? My daughter spoke to her GP today and although he was helpful he said that he can only refer her for a 2nd opinion to a specific hospital within the borough. They can then refer her on if they feel it is necessary. Apparently this is a PCT decision. He advised that my daughter would need to liaise with them.