Shirley - Interview 16

Age at interview: 72

Brief Outline:

Shirley was invited to join a surgical trial of sentinel node biopsy after she had been diagnosed with breast cancer (DCIS, ductal carcinoma in situ). (You can read more of Shirley's experience on the healthtalkonline DCIS site, Interview 22).

Background:

Shirley is a fruit grower, married, with 4 adult children. Ethnic background/nationality' English/Scottish.

More about me...

Shirley was invited for breast screening in 2006. She was a bit surprised to be invited because she was over 70 and did not expect to be called, but went along. She was called back for a needle biopsy, which was inconclusive. It was followed by an inconclusive core biopsy and then a wide excision, as a result of which she was diagnosed with DCIS (ductal carcinoma in situ, a form of breast cancer). (Her experiences are also on our website on DCIS, Interview 22).

 

Soon after diagnosis Shirley was asked if she would take part in a study testing a new surgical procedure, called sentinel lymph node biopsy. Breast cancer can sometimes spread to the lymph glands in the armpit, and the sentinel node is the first lymph node to be affected. Women have previously had to have four or more lymph nodes taken out, which can cause unpleasant side effects. If the sentinel node can be found and removed, and is found not to be cancerous, then the woman will not need to have any other lymph nodes taken out.

 

Sentinel node biopsy has already been found to be effective in randomised clinical trials, and many hospitals now want to offer it to their patients. Before they can do so, however, the surgeons must demonstrate they can find the sentinel node accurately. The study Shirley was asked to join was part of a national programme to ensure local surgeons could perform the procedure and needed 30-40 women to join.

 

Shirley was told she would have a coloured dye injected into her lymph system, so the surgeon could find which was the sentinel node. She would then have four lymph nodes removed (as the current standard treatment), including the sentinel node, which would then be sent away to the laboratory to check for any cancer and check if the correct node had been found. Although she found it difficult to be asked to consent to the research so soon after diagnosis, she could see no reason not to take part. She knew it would make no difference to her own care, and might benefit future generations, including her own daughters, daughter-in-law and grandchildren. The procedure was straightforward and not too painful. The only side effect was the blue dye, which was visible through her skin and took many months to fade away. Shirley’s lymph nodes were not affected, and she finished her treatment with a course of radiotherapy.

 

At her last appointment she asked how the sentinel lymph node study was going and was told it was going well. She feels it is important for study results to be shared with participants, and they should not have to ask for results.

The surgical study Shirley was invited to join was to check that local surgeons could perform a...

The result [of a breast core biopsy] was inconclusive still, and I was then booked in for wide excision on a wire guideline, which happened on October 1^st …I had to go in and have a sort of scan and the wire inserted… And I was in and done terribly quickly, and out the next day. And it was actually remarkably pain free and good, because it was only a tiny little bit, I think, removed.

 

So I was home on the third. I went back on the 18^th to the [specialist hospital], saw the second-in-command again, and the result was positive. And having been told it was positive I was sort of - it would be unkind to say bombarded, but I was asked more or less immediately if I’d take part in the Sentinel Node Trial, and I said, “Yes”, because it seemed pointless not to and it might help other people etcetera.

 

And he said, “Do you mind? We have to get forty people into a trial, and discover if it’s going to be a good thing just to take out four, or up to four [lymph nodes].” They might get it down to just one, I think. And I didn’t feel that there in fact was any justification to say no, because I was going to have to have it done anyway, and if it helped others, it was, you know, why not?

The sentinel node biopsy involved little apart from being injected with a dye which showed...

To have it done, one had to go in and have a dye put in. And the dye was, I think, injected. I think it was injected during the operation which pinpointed the nodes. And amazing dye. I think the blue’s only just gone [laughs]. And it didn’t hurt at all.

 

Could you see it through your skin, you mean, the dye or?

 

Oh yes, I was completely blue for months afterwards [laughs].

 

[Laughs] I thought when you said that you meant blue as in bruised. I hadn’t realised you meant the dye?

 

No, no. The first time, sort of after the core biopsy, it was black and blue from awful bruising, and the dye just was remarkably good dye [laughs]. And it lasted for, I suppose, almost sixteen months, fourteen months.

 

They were doing it in order to save people later on who sort of had the same thing. Because I believe that the normal thing is to take out all the lymph nodes, and you’re going to get sort of horribly swollen arms and water retention and etcetera etcetera.

 

I think they were attempting to achieve a reduction in having to take out all the lymph nodes, with all the possible difficulties I gathered might happen. And that by taking out only four, it would make life a whole heap more comfortable and easier for patients… I think it’s good, and much, much better for people if it’s only the one, obviously.

 

And in your case it was an operation you were going to have anyway.

 

Yes, completely. There wasn’t any options at all. And luckily, I think, because

I suppose one would have gone on thinking, “Have I? Haven’t I? Has it got to a node?” And it was immensely reassuring to be told it hadn’t.

 

It didn’t in fact involve me in anything that was not going to happen, and if by having done it, basically, if I’ve helped other people in the future, and particularly with daughters, daughters-in-law and grandchildren, you know, if it benefits any of them it’s a good thing. And others of course [laughs].

 

And in your case it wasn’t, there wasn’t any question of it being of benefit to you personally.

 

Absolutely not. No.

 

If you’d been asked to be in a trial where they were comparing one group against another and you wouldn’t be able to say which group you’d be in, they’d just randomly put you in one, how would you have felt about that?

 

I think differently, in fact, because I suppose there’d always have been a sort of feeling at the back of one’s mind that, “I wonder which? And if I’d had the other it would have been better or--” Actually, I don’t think I’d have liked that.