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Gynae cancer – Q&A session

All righty. Well, I hope you managed to get round to the different charity tables. And they’re going to pop away now actually, and I hope you got some of the lovely lovely scones and fruit and all that sort of yummy stuff and speak to other people. So we actually are going to try something new today.

We’ve never actually done this before at one of our health and wellbeing events. We’re going to do a bit of a panel. So you’ll have noticed in your invitation we asked you to submit some questions in that you had, that you would like to ask the panel and we’re going to ask them those today, anonymously just to let you know that as well.

So I’d like to welcome our panel up. So it’s Dr Quinn and Patricia and then we have Shauna asking the questions. So thank you so much. Hello again everybody. I hope you had some refreshments. The first question I think would be best directed towards you, Patricia. And that is “Coping with ongoing fatigue and worries about cancer returning”.

That’s a very good question. Fatigue when we do our holistic needs assessment, that Shauna alluded to earlier, is one of the most recognised symptom of your cancer diagnosis or your treatment. We are, I’ll not talk too much about coping with fatigue, because we are going to hear about fatigue later today. So that would hopefully answer your question. With regards to cancer returning,

I talked a lot about alert symptoms and it is all about Dr Quinn does a talk sometimes called “know your body, trust your instincts” and there’s not a better saying than that. And Frances even alluded to that about being very body aware. And it is about just trying to, you know, take the approach of, getting on with day to day life and not get too concerned.

But obviously, if it’s impacting you physically or emotionally, that’s something you can contact us about. No question is a silly question, it’s really important that you run things past us. If you’re having any symptoms that worry you or you having any anxieties about your cancer returning, we can signpost you and get you the support for that, be it counselling or be it Shauna and her three hours earlier like, if we can get you reassessed even for reassurance and it’s important just to reach out.

I’ll take that please, sure I’ll give you my tuppence worth as well about that. Again it’s very important that we advocate for ourselves and our friends or families or loved ones. You know, I always tell my junior doctors, these women are our mothers, our sisters, our daughters. It’s up to us to do as as best a job we can.

So when Frances talk about being an advocate, she was she’s a warrior because she’s out there with a badge on saying, look, this has happened me and I want to raise awareness to help people. And if that can help one person, only one person, if only one person today takes that message home and spreads awareness, then that’s a really, really positive thing.

The second thing is we can’t help you unless we know that things are going on. So 99 times out of 100, when somebody rings Patricia or Shauna after diagnosis, the vast majority of time it’s something very, very, fixable. It’s usually something benign, and people just want peace of mind. But we can’t help you unless we know you’re there.

So contact us anytime. There is no such thing as a silly question. We we actually love seeing people back because we check in on them, make sure they’re okay, but if we can then tell them good news after having told them bad news, that can only be an incredibly positive thing. So please if you are feeling anything, or if any of your loved ones or if you’re not happy, know your body and trust your instincts. Let us know and we’ll see you straight away. Thank you. This next question, I think I’ll direct initially to you Dr Quinn, “How can the same cancer return after you have been told that you have the all-clear and have been now for five years?”.

Ok, there’s no such thing in medicine as as a crystal ball. So, it only takes one cell. If you think of the trillions and trillions of cells that are in your body, if one of those cells remains dormant after a treatment, it can reactivate at any time. Sometimes it can be after six months, sometimes it can be after ten years.

Sometimes, we can have women with ovarian cancer and their ovaries are completely normal on the scan. We had a woman a number of years ago who had a lump in her neck and it came back as ovarian cancer and her ovaries were completely, completely normal but one little tiny cell had obviously fallen off an ovary and lay dormant in her body and just turned nasty over time.

So it’s we do our best to get rid of all this treatment, all the cancer from a surgical point of view and from a chemotherapy and a radiotherapy point of view. But that’s why, post diagnosis and post treatment, health is so important, that we raise awareness that if you do have any symptoms let us know straightaway to make sure it isn’t a recurrence but unfortunately that can happen no matter what cancer it is, whether it be a haematological cancer, a thyroid cancer, a gynae cancer.

They can always come back. And it’s about raising awareness for that. So it may be that, after 5, 10, 15, 20 years that we’ve seen these cancers coming back where we just haven’t got it all from our initial treatment.

So it’s not really, the vast, vast majority of people would deem it as a cure but you have to acknowledge that sometimes it can come back and can be really unlucky. Thank you. Our next question is about lymphoedema. I’ll maybe direct that you to you Patricia or a dual answer “Is lymphoedema in the groin area common after treatment and what help is available?”.

Maybe we should start by explaining what lymphoedema is. Well lymphoedema is a swelling, usually within the groin area and sometimes with breast cancer can be in your arm because, you have your lymphatic system, which helps drain, which is responsible for draining excess fluid and usually protein and fluid. And if you have a damage to your lymph nodes or you’ve had lymph nodes removed then they don’t work properly.

So you can get this buildup of fluid. Yeh it can be a complication of surgery or radiotherapy. So it’s important if you have it, any swelling that you’re worried about it, that very much can be dealt with. We have a lymphoedema service. They can use, compression bandages, they can talk to you about exercises that you can do to help reduce that swelling or make it can be very uncomfortable as well.

So it’s really, really important if you have swelling to approach one of us and we’ll get you referred to that service. That’s not a problem. Thank you. Yeh the way that I like to think about it is if you imagine all your blood vessels in your body, both arteries and veins, they’re all wrapped with another system that’s called your vascular system.

So it’s all your pipes basically that carry blood to and from different organs. But wrapped around all those, all those individual pipes is another pipe network called the lymphatic system and that helps mount your immune response. It helps, if you have an infection somewhere, it helps bring in healing factors to that part of the body.

It helps take away infection, helps take away, waste products in the body and different things. But if you cut into a blood vessel, you’re also cutting into that system. So it’s very, very it’s a lot more common with like vulval and vaginal cancers where we have to, sample lymph nodes and things like that. So all your lymph nodes are so supply into lymphatic system.

So if we’re taking out lymph nodes then there’s a chance we can damage that system. And that can leak what we call lymph, which is a clear fluid that surrounds all the all the vessels in the body and it can be a huge problem. Again so in some cases that can be actually worse than the initial cancer living with the after effects of that, especially for some of the more invasive cancers like for example, if we are surgically treating advanced ovarian cancer or advanced endometrial cancer, then we will always try and sample the lymph nodes and take away lymph nodes as well. And with that damage between 8, 10, 20% of patients can get a build up of this lymph because it can’t drain away properly, because the pipework that it lives in has been broken.

So it can it can flow into that organ that’s affected. Classically for breast cancer patients, it’s lymphoedema of the armpit or the lower arm. For gynae patients it’s it’s lymphoedema of the pelvis going into the legs. And again it can be an awful condition people have and it’s a side effect of treatment. Thank you.

This next question is about hormone levels and it just says that “we would like more information on hormone levels”. So that could be possibly with regards to what they’re expected to be after treatment or with regards to maybe identifying menopause. So it’s an open-ended question, Dr Quinn. Well that’s a very, very, difficult thing to answer, I suppose, an open-ended question.

You know, hormones are very important in our bodies. We have to accept that after at different points in your life, your hormone levels change, like pre-puberty, normal life, post-puberty or post, post-menopause, I should say.

There is no such thing as a normal level, ok. It’s you don’t treat a blood test, you don’t treat the value in a piece of paper in front of you, where I always tell my junior doctors to treat the woman in front of you, treat the patient don’t treat the value. So I suppose, some people can have hormone levels that are very, very low and sail through menopause. Other women can have very, very high levels and can be symptomatic.

There is no right or wrong answer when it comes to a hormone level but again you don’t treat the number, you treat the patient. Perfect, thank you so much for that. Our final question is about genetics and if there is a link between genetics and different gynae cancers and if we test for that. Again, I think that’s probably directed towards me.

So I picked up a book in, my colleague Dr Dorman has kept all his books from university in in our office, we share an office together. And I read one of the books recently from 1972 from Queen’s University. And it was, the A Complete guide to obs and gynae, Obstetrics and Gynecology in Northern Ireland.

And it’s amazing, it’s completely defunct. Everything we knew 50, 60 years ago has completely gone, ok. And the textbooks that I used in Queen’s 25 years ago are completely defunct. I mean, the paper isn’t it’s not worth the paper they’re printed on because all the knowledge is gone. So likewise, one of my old bosses said to me Declan if you’re doing the same thing you did five years ago, it’s time to give up.

You have to keep on progressing, doing new treatments, you know seeking out the best, most up-to-date treatments for our patients. And if we were sitting here in 30 years time, some of these cancers won’t exist. You know cervical cancer, we have the opportunity in the next generation of our lifetimes to eradicate cervical cancer. Now, why we won’t do that is because a lot of the third world countries and lower income countries, don’t have cervical screening.

They don’t have access to the to the vaccine. The vaccine for cervical cancer, used to mark against two types of virus. The very first vaccine marked against fought HPV 16 and HPV 18 and they’re the they’re the two viruses that cause about 70% of cervical cancers. Then a couple of years later we developed a new vaccine called Gardasil and Gardasil marked against HPV 6 and 11 and they cause, they can cause genital warts and ulcers and things and 16 and 18. Now we have a new vaccine called Gardasil 9 and that protects against nine of the most pertinent strains of this this virus. So our kids now are getting access to these new vaccines, in the future who knows where it’ll end up.

Will we have a vaccine that will that will protect against all the HPV vaccines? There’s 150 different types of HPV. We didn’t even know about this 50 years ago. We didn’t know it. We knew there was maybe a link, but now we know it causes 99.7% of all cervical cancers. It causes about 70 to 80% of throat cancers,

Anal cancers. You know these are very, very difficult cancers that a generation ago we didn’t even know what the cause of them, well we thought it was smoking, because it causes everything, of course. But we couldn’t link up why people were getting it when they were ridiculously fit and healthy. So the future is very, very bright.

And the long-winded rant I’ve just went on means that in the future it’s our genetics that are going to cure cancer. Ok, so we haven’t got a screening test yet for, endometrial cancer. We haven’t got a screening test for ovarian cancer. We’ve tried, with endometrial cancer now we test all new endometrial cancers for a gene that some people don’t have.

And if you don’t have that gene, you might have, a syndrome called Lynch syndrome, which predisposes you to having bowel cancer as well. So if we if we if we find that, then we also we’re looking for other things. We didn’t know about that a number of years ago. As regards ovarian cancer, we we now test for the BRCA gene, the BRCA1 gene.

And that has a huge implication for breast health, that can increase your chance of getting breast cancer, 40 between 40 and 60% of people will end up with a breast cancer as well. Huge implications for women and their families if they have it and if they have female offspring or if they have male offspring and carriers. So it has a and you know, and a lot of famous people now have opted to get their breast removed Angelina Jolie, for one for example, opted to get her breast removed because she had such a high chance of getting breast cancer as well.

But it’s in the genetics where we will find the answer, because there’s more and more research being done now for ovarian cancer. It’s the one we hate the most. It’s the one that GP’s fear the most. It’s the one that most GP’s will only ever see 1 or 2 cases in their lifetime. But we I treat everybody as if they have it to try and make sure that people don’t have it. It’s like in pregnancy

I treat everybody as if they’re an ectopic pregnancy until I can prove everything’s ok. But it’s in genetics where we are going to find the answer because in the future, the amount of work being done, sequencing, what kind of where these cancers come from and how the body turns off these genes that can suppress these cancers. So, the future will be how we were able to prevent it from happening completely.

I know we will find the answer in in our lifetime because if you look back on the last generation where we didn’t even know about HPV, now we’re talking about eradicating it in the Western world, it’s it’s actually it will become a third world disease because people in Africa don’t have the ability to get screened or can’t get the vaccine.

As we all get older, more and more of us are going to be at risk of ovarian cancer. But if we find out who’s more likely to get it in the first place, then we will be able to prevent it in the future. I’ve no doubt in my mind it might take us a generation or two, but we will be able to prevent this awful disease.

We’ve tried to prevent it before with ovarian screening, but all the tests that we have just don’t work. There’s evidence to suggest they actually make it worse for women. And that’s like getting blood tests regularly. Frances you mentioned that earlier about not being able to get a scan.

I was really annoyed whenever you said about your first experience that should not have happened, and I’m really sad that that happened and that acknowledge you, it should be acknowledged you’ve had a really tough time, both in your diagnosis and and your treatment, but your what you did say was really inspired me. You got to know your body, and you got to stick to your guns and fight for yourself because other people won’t. Do you know what I mean? So, we will find the answer for ovarian cancer.

We just haven’t yet. But the genetic side of our of our cancer treatment will not only, will help prevent it, but it’ll help guide proper treatments as well. So like, even with endometrial cancer, if you have if we look at the genetics of your cancer, we’re able to use new and novel therapies like immunotherapy to target that cancer a lot more directly.

So the future is actually very encouraging. There’s work being done all around the world, for, for all these gynae cancers. And there’s people working tirelessly for this. And I know in the future we will get on top of these things, but unfortunately, just not yet, that’s amazing.

Thanks. Yeah thank you so, so much for submitting them ladies. Yes. Questions that’s amazing.

Thanks.