Patient and Mother’s Story

Getting to see the right oncologist

I have uterine leiomyosarcoma, a form of cancer of the smooth muscle. My diagnosis carne as a great shock as prior to hysterectomy I had been told that I did not have a life-threatening condition.

I was sent to a local gynaecological oncologist, who told me that she saw a new case of uterine cancer every week, but saw my rare cancer about once every five years.

I researched the internet and was horrified to learn that sarcoma patients should see sarcoma oncologists who see at least 100 new patients with soft tissue sarcoma a year. The more I read the more questions I had and the more I lost confidence in my oncologist who was not an expert on my rare cancer. I read the region’s guidelines for gynaecological cancers which stated that ‘where specialist centres exist for the treatment of specific rare tumours such as sarcoma, referral to these centres is recommended’. Why hadn’t I been referred?

I read the NICE guidelines for which uterine sarcoma came under shared care. The site-specific and sarcoma MDTs should clarify under what circumstances patient care should be transferred from one team to the other. Should that be after hysterectomy, or only if the cancer spread?

My local gynae oncologist just had my notes in her hand when advice was sought from the Royal Marsden Hospital by phone about radiotherapy, which was recommended. A letter was written asking for guidelines, but it did not arrive. It was then re-sent and a reply came advising that radiotherapy was trot recommended – too late as I had already had it!

A further letter was sent from the Royal Marsden giving advice about follow-up and HRT including the fact that my tumour had not been tested for hormone receptors. I had copies of these last two letters, but at my last meeting with my local oncologist when I referred to these letters she said they were not on my file. ‘What exactly are you worried about?’ she asked me. I am not sure if I just looked at her, or actually said, ‘My life!’. I felt that I could no longer rely on communication between the two hospitals.

This oncologist had told me that if it ever spread to my lungs, which is very often the case with this cancer, there was no cure so would I want to know? Follow-up was a question – I was certainly not happy with a scan at six months and then clinical follow-up only!

I ‘self-referred’ to the Royal Marsden Gynae Team, where I had a CT scan and was told the devastating news that I had seven nodules in my lungs, even though I had no symptoms. I knew what a poor prognosis I had and was referred to the Royal Marsden Sarcoma Team to discuss chemotherapy although I knew that that could not cure me.

The sarcoma oncologist told me that surgery to my lungs to remove the seven nodules would be my best option, as at that stage they were not technically inoperable. She would put my case to the thoracic surgeon who specialised in removing lung metastases in sarcoma patients. She said it would not cure me, but would give me more time. Yes, it was right to know that the cancer had spread to my lungs, because surgery could be contemplated. Although it was true that my disease could not be cured, I was now given some hope for an extended life.

I had successful lung surgery at the Royal Brompton Hospital and my thoracic surgeon agreed with me that uterine sarcoma patients need to be seen by sarcoma oncologists so that they can have the chance to be referred to the thoracic surgeons if their cancer spread to their lungs.

Then I found a lump on my lower back which was another tumour. It was removed by a sarcoma surgeon at the Royal Marsden Hospital. That was almost a year ago and I am very much alive as you can see, thanks to my wonderful sarcoma oncologist and thoracic and sarcoma surgeons.

I now have three monthly CT scans and know that I can see the sarcoma team straight away if l suspect anything untoward. To date I have not needed palliative chemotherapy. If I had been referred directly to a sarcoma oncologist with particular knowledge and experience of uterine sarcoma for follow up after diagnosis, I would have been saved a huge amount of anxiety, aggravation and trauma and would have had relative peace of mind.

At present, there is a worryingly widespread difference of opinion on how uterine sarcomas should be followed up and by whom! Getting to see the right oncologist certainly made a difference to me. Improvements to the system need to be made so that more women can survive longer.

When my death is inevitable, I will be able to say to my husband, four children and widowed mother, that I was seen by the experts in this rare cancer. Would other uterine sarcoma patients be able to say this to their families?

Thank you.


Rare day to remember

My daughter had been asked to speak by the Rarer Cancers Forum at the Second Parliamentary Summit on Rarer Cancers. As her husband was away on business in Denmark, she asked me to go with her.

This meeting was held at the Houses of Parliament on Thursday 19th June, and was opened by Dr Ian Gibson MP, Chair of the All Party Parliamentary Group on Cancer, its purpose being to improve the care of cancer patients.

In the Grand Committee Room, (Westminster Hall) the seats were in the normal horseshoe arrangement for which all had name places, and I was sitting next to my daughter on the front row. All the speakers had microphones and the system was very good, so she and I dared not even whisper to each other!

The list of attendees numbered 86, which included MPs, Peers, Professors and other members of the Medical Profession, Chairs of Committees, Trustees, Executives etc., apart from reporters, and the five patient speakers of which Rochelle was one.

The other speakers’ subjects were:- Diagnosis, Care in Hospital, Follow-up Care, and Palliative Care. They spoke movingly about the callous treatment meted out by those in the `caring’ profession to patients at their most vulnerable time. The lady with nose cancer broke down when she told of her two-year fight to get a prosthetic nose.

My daughter spoke eloquently about ‘Getting to see the right Oncologist’ (see above). She has a cancer called leiomyosarcoma which was diagnosed exactly two years ago. It had come as a great shock as previously she had been told that she did not have a life threatening condition. Prior to that we knew little about cancer and were not aware that there were `cancers’ `rarer cancers’ and `rare cancers’.

My daughter is very concerned about the people who do not have access to the Internet to research their rare cancer or who do not question their doctors and spoke about this during discussion time.

Other points brought up were:- the important part played by real experts; that there is a real need for information in every part of the cancer pathway; the performance of nurses needs to be measured for cleanliness, compassion and dignity in caring; patients should be involved in hospital committees; that sometimes GPs do not pick up on symptoms; access to care is necessary very quickly; the necessity of getting the right treatment to the right patient at the right time. Patients are in shock when diagnosed and must not be treated as second class citizens. They don’t expect to live forever, but deserve better treatment from the NHS. PCT must better manage applications for drug treatment or clinical trials. New and clinical drugs are very difficult to get as Drug Companies from abroad say they won’t do trials here as they know their drugs will be turned down as too expensive for use here – this problem exists outside cancer too. The UK is slow to open trials as it takes three years for a drug to be accepted here whereas trials could go through in three months elsewhere. Patients’ travelling to trials is expensive and PCT’s won’t accept this.

Following the meeting my daughter spoke to Professor Michael Rawlins the Chairman of NICE and

pointed out to him how vague some of the guidelines in one of the books produced by NICE.

We could then have gone into the Visitors’ Gallery at the House of Commons or House of Lords, but as our time was limited, we chose instead to go to the Royal Marsden Hospital to see my daughter’s superb oncologist who was taking maternity leave. The oncologist gave her a wonderful greeting, hugged her and said she looked forward to seeing her again on her return to work.

After a very exhilarating and uplifting day, we then made our way to Waterloo Station and home.

Naturally, I am immensely proud of my daughter and at the confidently assured way she put over her speech, but how l wish that none of the above had been necessary and that she did not have cancer. I can only pray that a complete cure will be found very soon for all forms of cancer.

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