Uterine Serous Carcinoma and Herceptin

Hi EPI7

I think it is always good to put together a list of questions. My first review took place around a month after treatment and it was a general chat, quick examination to check on healing and to discuss moving to nurse led follow up clinics. There were no scans.

I have not come across anyone on here who has been on herceptin/trastuzumab within the womb group- however there may be ladies who have done the treatment and not shared it on here. 

My understanding is that it is a type of monoclonal antibody that is more often used with breast cancer. However both breast and womb cancer can have a hormonal factor. 

Looking online there does seem some literature where it is being used but seems to be mainly America. 

Trastuzumab | Macmillan Cancer Support

I think the best thing is to perhaps just ask your consultant whether it could be considered and whether there are currently any clinical trials ongoing. 

Find a clinical trial | Cancer Research UK

I do understand what it is like to have one of the rarer and more aggressive cancers- mine was. However I remain well at almost 3 years post treatment. 

Another thing you could do is to give the Support Line a call and ask to talk through your questions and they may be able to advise you further. 

Jane

Hi Jane. Thanks for replying so quickly. I’m having a wobbly moment and just panicking at not knowing what’s next. 
I made the mistake of looking up stats ostensibly to see what questions to ask at the appointment and scared myself. The Herceptin information looked promising but I couldn’t see anything in the UK re its use for uterine cancer do I just thought I’d ask here.

I will ask about clinical trials just in case I need it in the future.

BTW it is reassuring to know you are 3 years post treatment

It can feel scary when treatment has ended, especially when a check up is due. 

My first appointment was literally a quick chat about what was next and a quick examination- tummy area, groin for lymph nodes and a quick internal to check on healing. For me it also included what to look out for re recurrences and plans for the next 2 years of 3 monthly checks. 

I have not come across herceptin for womb cancer in the UK. In UK it appears to be more breast/stomach cancer. 

Best not to look at statistics as they are just a snap shot in time and they also do not know you personally and your own medical history. They can only ever be a rough idea. 

Yes grade 3 can sometimes recur more often than a lower grade cancer but that is why we were given so much treatment after the surgery. Just because it can recur does not mean it will. Listen to your body and any signs that don't feel right, call your CNS. If there is a recurrence it is better to catch it early. That is why we have frequent check ups. 

If there is a recurrence then apart from being vigilant and reporting any signs and keeping as healthy as possible, I don't feel personally there is much more we can do. If there is a recurrence then there is often some form of treatment that can be used. 

I was not offered any treatment after the chemo and radiotherapy. You could ask about hormonal treatment and whether it may work for you but there may well be side effects. I have only heard of it being used for higher stage womb cancers though. 

I think for me also that once treatment was ended, it was the first time that I could process the whole cancer experience, before then life was full with appointments etc. With the check ups once the first one is done and you know what to expect, they do get easier. And between check ups I was always encouraged to email or phone my CNS with any worries.

Jane

I’m really glad to hear your treatment has finished, and wishing you the best at your next review. 

I asked a similar question on the forum a few weeks ago and then also asked my mum’s CNS. I was told they don’t tend to test tumours for HER2 at the first line of treatment. 

The CNS told me that any testing for HER2 status would be if the cancer reoccurred as the drug is currently only used in the NHS in a relapse setting. I have seen a lot of people in the US mention it, with some people being treated with Herceptin and chemo as a first line but this doesn’t seem to be the case in the UK yet. 

Although my mum has serous which isn’t typically driven by hormones, they did mention that my mum’s cancer is estrogen receptive. I don’t know much detail at this stage but it sounded like there’s a possibility for hormone treatment if the cancer recurs (or as maintenance) despite her having serous so it could be worth asking if there’s any other testing they’ve done and if any of that testing opens up any other possibilities for treatment.

With type 2 endometrial cancers- such as carcinoma sarcoma, serous, clear cell etc- they are not typically dependant on oestrogen for growth- which is one reason why they can be more aggressive. 

The type 1 cancers that are more common can be associated with excess oestrogen. over weight etc. 

Both types can test positive for progesterone and oestrogen. This info helps when they are looking at the most appropriate treatments- especially after the first line ones. 

If a cancer is hormone receptive then it may be possible to offer hormone treatment- megace/provera/letrozole/anastrozole. This can sometimes be used as a treatment or to help prevent recurrence. 

I haven't heard of any monoclonal antibody (herceptin etc) being used for endometrial cancer in the UK. It seems on here that the second line treatment that is offered is Immunotherapy and there are several types. 

It never entered my head that they might examine me at my appointment I just thought it would be a chat. Don’t need to worry about shaving my legs yet though

With regards to questions I don’t know if my cancer is oestrogen receptive so that’s another thing to ask next week thank you.

Rlove95 it is interesting to hear that Herceptin can being used in a relapse setting. 

So my list of questions is getting longer. I’m a person who needs to be in control and handing myself over to the medics was difficult but obviously totally necessary. The only way I feel I have any control is by getting as many answers as possible and being informed. It’s working out what questions to ask is the hard part. That’s why I was panicking. I’m a big more settled thanks to your replies.

Thanks very much