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Old 10-16-2006, 04:13 AM   #1
Join Date: Mar 2006
Location: UK Hampshire
Posts: 8
Angie Lalanne HB User
Thyroidectomy at Royal Marsden, London following poss lymphoma

I have Hashis and been living with a large goitre for the last 15 years. I have had a right hemi (partial) thyroidectomy at the Royal Marsden, London, last Thursday under Mr Rhys-Evans, who is supposed to be the UK's leading Thyroid surgeon. I spent hours researching who was the best UK thyroid surgeon, and I managed to get myself referred on the NHS, so it was free. I know surgery, especially neck surgery is horrendous, but all in all I feel like I have been so well cared for. I feel so lucky.

I first saw him mid September when he ordered an ultrasound and a biopsy, and following an inconlusive biopsy result which showed a possible lymphoma, I saw one of his team on the 6 October who recommended I have half of the thyroid and the nodules removed. One of my nodules was 4cm, and though the ultrasound looked normal and the risk of cancer low, we both agreed better to be safe than sorry. I have seen many thyroid specialists over the years but this is the first time I have been told that Hashimotos pre-disposes people to lymphoma and I was horrified. I was always quite relaxed (well, as relaxed as you can be!!!) about the risk of my nodules turning cancerous because thyroid cancer is considered so treatable and the prognosis is so good, but lymphoma is a different story.

I was a mess. I couldn't stop crying and I was so terribly stressed. I was convinced I would either die in surgery or that they would open me up and find I was riddled with cancer. Every ache and pain made me panic and I was paralysed with fear at the thought of not being there for my 2 very young children. This could have been a long, drawn out and very dark period for me, dreading the op and not knowing the result, but my surgeon actually rang me an hour after me leaving her surgery and booked me in for th op the following Thursday,6 days later. She said there was no clinical urgency, but they could fit me in and it would be good for me to get it over with. A mixture of relief and dread washed over me. There was no going back!!!

They admitted me the day before, and the anaesthetist and surgeons came to see me to discuss the op. They took enormous care in choosing where the incision would go,so as to leave as unnoticeable scar as possible, and I saw them both again just before I was put to sleep. When I opened my eyes, a lovely female surgeon was there holding my hand and telling me everything had gone extremely well, and she visited me later that day to tell me that upon close examination of the nodule, it was almost certainly benign. What a relief!! I was alive AND I didn't have cancer!!!!!! She visited me again on Saturday morning (on her day off) to check me over before I went home. I am now 4 days post op and recovering slowly but surely.

It seems that after reading other peoples experiences, I have been so lucky in the care and treatment I have received. Just have to make sure I don't have MRSA now!!!!!

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Old 10-16-2006, 05:54 AM   #2
Join Date: Sep 2006
Location: Plymouth, MA
Posts: 67
ychonks HB User
Re: Thyroidectomy at Royal Marsden, London following poss lymphoma

That is great that everything went so well. I felt the same way about my doctor her in Boston. The whole Brigham and Women's Hospital was kind and willing to answer any questions or concerns. It just made everything so much easier. I also had a partial thyroidectomy and it's been almost two months and physically it all feels the same. Mentally is a bit different b/c my nodule turned out to be malignant. But I am great and doing well...anyways I just wanted to say congrat's on the good surgery and I think it was really important to research like you did.


Old 10-16-2006, 11:26 PM   #3
Join Date: Mar 2006
Location: UK Hampshire
Posts: 8
Angie Lalanne HB User
Re: Thyroidectomy at Royal Marsden, London following poss lymphoma

Hi Yvonna

I am sorry to hear it was malignant. Are you needing treatment? Do you mind me asking why they thought there was a problem in the first place?


Old 10-17-2006, 05:16 AM   #4
Join Date: Sep 2006
Location: Plymouth, MA
Posts: 67
ychonks HB User
Re: Thyroidectomy at Royal Marsden, London following poss lymphoma


No I don't mind if you ask at all. It actually all started over two years ago when I was getting a routine physical and the doctor felt the nodule. At that time I had an ultra sound done but it only showed cystic fluid. I kind of went back to life and than my obgyn felt it and referred me to an endocrin. This was back in the beginning of the year. Well, he ordered an ultrasound with a fine needle aspiration biopsy. The results came back with a 20-30% chance of cancer due to suspicious Hurthle cells. And looking back on it I wasn't scared at all b/c you never think something like that would happen to you. So, I met the surgeon and set the date, Aug 24th. And a week later was told the results over the phone by the nurse (longer story). And yeah I freaked out because cancer is a scary word. I returned home to Los Angeles for a month and went to our practitioner, 2 endocrins, 1 muscle balancer, 1 holistic healer, and 1 Chinese medicine doctor who administered acupuncture with electricity. All the endocrins, including mine here in Boston and my surgeon all suggested aggressive therapy meaning a TT and RAI and then the meds. But my number one question was "will I regret keeping the remaining thyroid in a few years if I weren't to get it removed now?" And all 4 of them said NO.

This was the option I was faced with:
1. Have a TT and RAI and almost have a 0% chance of recurrence b/c the RAI may not take.
2. Have 2-5% chance of recurrence on the remaining thyroid.

Really not fair, at least that is what I think. My decision is based on hours of doctors appts and research and it was well worth it.

I have decided to keep it and am going to be put on thyroid suppression to reduce the activity of the remaining lobe b/c it is more susceptible to recurrence if it is working very hard. So, needless to say my life has changed and my outlook on everything has a new twist on it.

I am sorry this was so long...


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