Molar (hydatidiform mole) We have written this leaflet for women and their partners who have been affected by a molar pregnancy (also called a hydatidiform mole). 1

You may never have heard of In this leaflet, we aim to explain: this condition and people around you probably won’t • what a hydatidiform mole is have either. You might well be feeling confused, upset • why follow-up is necessary and and anxious – perhaps • what that follow-up involves. especially if you have been searching on the Internet. We will also look at some of the thoughts, feelings and reactions of

And of course, you may also other women and their partners who

be grieving for the loss of have been through molar pregnancy your baby. themselves. My doctor didn’t seem to kn“ ow what hydatidiform mole was. I looked it up on the Internet and nearly “ scared myself witless.

1 We hope it will also be helpful for family, friends and health professionals

2 What is a hydatidiform The hydatidiform mole itself is one mole? What does it of a group of rare conditions called mean? gestational trophoblastic tumours (gestational means in pregnancy). Hydatidiform mole is a medical term which means a fluid-filled mass of cells Any mass of cells can be called a (mole = a mass of cells; hydatid = tumour. That doesn’t necessarily mean containing fluid-filled sacs or cysts). it is malignant (cancerous); many tumours are benign (harmless). In a molar pregnancy, an abnormal fertilised egg implants in the About one in 600 is a (womb). molar pregnancy. That means it is quite rare, especially compared with The cells that should become the , which affects around one grow far too quickly and take in four pregnancies. over the space where the would normally develop. Those cells are called . That’s why molar pregnancy is sometimes called ‘trophoblastic disease’.

3 A hydatidiform mole may be either partial or complete , depending on the genetic make-up of the fertilised egg. The easiest way to explain this is to look first at what happens in a normal conception. Normal conception Each of our cells contains 23 pairs of , where one of each pair is from the mother and the other from the father. In a normal conception, a single with 23 chromosomes fertilises an egg with 23 chromosomes, making 46 in all.

Genetic Origin of Hy2d3 atidiform Moles A      23 c    a 23   23 c  . 23 46 Norma l Con ce ptio n 23 23 A      23 Partial mole 23 Pcar t ia l  M ol e  a In this situation, two sperm fertilise the egg instead of one, creating 69 instead of   23 c  . 23 46 46 chromosom2e3s. This is called a triploidy. There is too much genetic material T    a . and the pregnancy deve2lo3 ps abnormally, with2 t3he placenta outgrowing the baby. T   a   d  b There may be evidence of a but it will be abnormal and cannot survive. 23 23  69 c  . 23 69 Partial Mol e 23 23 T    a . 23 ComT pl et e  Ma ol e d  b 23 23  69 c  . 23 23 69 A 46 c   c  23   a. T a       c 23 23 46 dCom bpl e te M o l e   . There have been some (very few) reports of live babies born after what was thought to be a partial mole, but this may hav2e3 been the result of an extremely 23 A 46 c   c  rare condition where a normal baby has a mole for a “twin”.   a. T a T a a  T a a c    c   a    d b        c 23 d b      . 23 46 23 4 T a a  T a a c    c   a    d b  Genetic Origin of Hydatidiform Moles

Norma l Con ce ptio n 23 A      23 c    a 23   23 c  . 23 46 23

Partial Mol e Complete mole A complete mole is when one (or even two) sperm fertilises an which has no genetic m23aterial i2ns3 ide. Even if the father’s chromosomes double up to T    a . make 46 in all, the balance of chromosomes from the mother and father is wrong. T   a   d  b  69 c  . Usually the fertilised egg dies at that poin2t 3 but i2n3 rare cases it goes on to implant in the uterus. When2 3it does, no embryo grows, only the (t6he9 cells that will become the placenta) and that grow2s 3 to fill the uterus with the molar tissue. Compl ete Mol e 23 A 46 c   c    a. T a       c 23 d b      . 23 46 23

T a a  T a a c    Othcer c o mp lica taio n  s   dC hbor io  carcinoma more often arises In a normal pregnancy, the trophoblast from other types of pregnancy and it invades, or burrows into and through affects one in 50,000 pregnancies. the lining of the uterus. However, in The very small risk of developing about 14% of complete moles and 1% invasive mole or is of partial moles the trophoblast not the reason that molar pregnancies are only grows very quickly, but also followed up. It is also the reason that burrows more deeply into the uterus the follow-up centres are located in than it should. units dealing with (oncology) In these rare cases, the trophoblast or trophoblastic tumours. They can cells can become malignant detect trophoblastic disease very early (cancerous) and invade and spread to and the cure rate is almost 100%. other parts of the body. This is called You can read more about the follow- invasive mole . If it is not treated, up procedure on page 9. it can develop into choriocarcinoma .

This is an extremely rare complication of hydatidiform mole.

5 Signs and symptoms of Signs and symptoms are mainly: molar pregnancy • Missed period/s and a strong positive pregnancy test Some women will have no noticeable symptoms of molar pregnancy, or may • A lot of nausea (feeling sick) or recognise them only after they have vomiting. This can be very been diagnosed. troublesome This is because most of the symptoms • Irregular from the vagina. are due to very high levels of the The may contain little fluid- pregnancy hormone hCG (human filled cysts (like tiny grapes) chorionic gonadotrophin), so they can • Symptoms like those of a be very like the usual symptoms of miscarriage, including pain and pregnancy or miscarriage. bleeding

If you have never been pregnant, or Your doctor may notice other changes have not had particularly strong that suggest molar pregnancy: pregnancy symptoms before, it can be hard to know what is normal and • Your uterus may be larger than what isn’t. expected from your dates • Your may be enlarged (due to the high levels of hCG) • You might have high and in your urine, though this is rare.

The level of hCG in my

body was far beyond “ anything normal. That explained“ why I had been feeling so unwell.

6 Diagnosing molar pregnancy It was painful to

realise that for all

After a miscarriage “ these weeks there wasn’t a baby Most cases of molar pregnancy are “ diagnosed after what appears to be a growing inside me. “normal” miscarriage where the It felt like we had woman has had surgical management been tricked. of her miscarriage. You might hear this procedure referred to as an ERPC, an “evac” or a D & C. In pregnancy

In most hospitals, a sample of the In some cases, the GP or hospital tissue that is removed is sent to the doctor might suspect a molar laboratory and tested to see if it is pregnancy. If so, s/he might refer you normal pregnancy tissue. (This process for one or more of the following: is called histology and you may be • A blood test, to measure your hCG asked to give your permission). This levels (this might be done more examination can identify molar tissue than once over a few days) and thus a molar pregnancy. • An ultrasound scan (unless you There may be a delay between when have just had one) you have the surgery and when you • An appointment with a hospital are told that you have (or might have) gynaecologist or Early Pregnancy a molar pregnancy. It may be some Unit days or a few weeks after your miscarriage when you are contacted If your doctor diagnoses or strongly by letter or telephone. You may be suspects a molar pregnancy s/he will asked to return to see the doctor recommend that you have surgery to before you are told any more. remove any pregnancy tissue. The diagnosis will then be confirmed by laboratory examination.

I thought nothing It is very important that you could be more understand that this process is not

“ devastating than a termination of pregnancy (an

losing a baby, until ). In most cases there never a month later when was an embryo or it died at a very they told me it wa“ s early stage, and even in a partial mole a partial molar it will not develop. Even so, you may pregnancy. still feel a sense if loss for what would have been your baby.

7 What happens next? If you have a partial mole , confirmed on review at your follow-up centre, All women who are diagnosed with you will be followed up until your molar pregnancy are followed up to serum hCG returns to normal, check that their hCG levels drop back confirmed with a urine sample four to normal. weeks later. The hCG levels are tested every two You will be advised not to get weeks on samples of blood (serum) pregnant while you are still in and/or urine. The results are reported follow-up. as IU/L, which means International Units of hCG per Litre. The normal If your hCG level: serum level is 4 IU/L or less and the • doesn’t fall to normal or normal urine level is 24 IU/L or less. • stays the same for three successive • In most women, the hCG levels samples or drop fairly quickly. If you have a complete mole and your serum • starts to rise again hCG drops to normal (4 IU/L or less) within eight weeks, then your doctor will recommend you will then be followed up for a treatment. total of six months from the date of About one in ten women need your miscarriage surgery. additional drug treatment If it takes longer than eight weeks, () to kill off any then you will be followed up for six remaining molar cells. months from your first normal serum

Treatment is very effective and will hCG.

not normally affect your chances of having a child in the future. It is now nine weeks since I lost m“ y baby and my levels have not yet dropped to normal, so I have “ missed the short follow-up.

8 Who does the follow-up? 1. You will receive a letter from the follow-up centre telling you that Depending on where you live, your you have been registered for the follow-up will be done at one of the follow-up programme. three specialist centres in the UK: 2. A few days later you will receive a • Charing Cross Hospital in London small box or packet containing a letter for your local hospital or • Weston Park Hospital in Sheffield clinic and a small tube or tubes for or your blood and urine samples. • Ninewells Hospital Dundee 3. On the date requested, you collect You are unlikely to have to go there a sample of your first urine of the yourself, as they will arrange for your day and place this is the small tube. local hospital or clinic to take blood You then attend the hospital or samples and to send these on. clinic for a blood test, and the blood will be put into a second They will send your test results to tube. your GP and your hospital doctor, but you can also contact them directly and 4. You put both tubes in the box or they will tell you the result and how packet that you received, along you are doing. with a form on which you give details of your last period and any The procedure may vary a little drug treatment you are having. between the three centres, but not a You then close and post the packet great deal. As most women are (no stamp is needed). followed up by Charing Cross Hospital in London, we describe their 5. Once your blood tests are normal, procedure here: you will only need to send a urine sample, so you can send them from home, without having to go to the hospital or clinic.

I was monitored for six months and thankfully my levels went down quickly. I als“ o attended one of the “ support group sessions at Charing Cross Hospital, which was very helpful.

9 What if I have an You will have your treatment in either invasive mole or Charing Cross or Weston Park develop Hospitals. choriocarcinoma? Drug treatment (chemotherapy) is The chances of you having an invasive very effective. Once it has been mole or developing choriocarcinoma completed successfully, you will be are really very small. But if you do advised to wait one year after have either, the staff at your follow-up chemotherapy treatment before trying centre will give you clear advice and for another pregnancy. guidance. There is no increased risk of having an They will tell you if you need further abnormal baby because of the investigations, such as ultrasound, chemotherapy. X-ray, CT or MRI scans.

Even having a tiny risk of developing cancer is terrifying, e“ specially when it has all stemmed from “ something as happy and pure as trying to have a baby.

10 How can I best help myself?

• Always send the samples requested • If you do become pregnant, it is on the date requested – don’t put it very important to tell the follow-up off! service.

• Make sure that your urine samples • After your miscarriage surgery, you are the first urine of the day, as can use the contraceptive pill even this is when hCG levels are at their before your hCG returns to most concentrated (just like when normal. you do a pregnancy test).

• Avoid getting pregnant while you are in follow-up. Pregnancy produces hCG, so it will be very difficult to know whether increasing hCG levels are from the pregnancy or from molar tissue growing again.

When I first realised I would have to wait (before

“ trying again), I cried for about a week. Life seemed so unfair and to have no control over when I could try for a baby was awful. I now feel much better “ and stronger. I would rather be safe and well for my 3 year old daughter than risk damaging my health.

11 Frequently asked Will I have normal periods questions during follow-up? It may take a while for your periods to Do I have cancer? get back to normal. Some women find If you have a hydatidiform mole that that they have heavier periods for the has gone without needing first month or two but this usually chemotherapy, then you do not have settles down. cancer. A very small proportion of molar pregnancies can develop into an How long will the follow-up invasive mole or choriocarcinoma, last? which is a form of cancer. Fortunately Follow-up for a partial mole might be it is a cancer with an almost 100% as short as two to three months from cure rate. the date of your miscarriage surgery. However, some women will continue Am I going to die? follow-up for longer than this, Women do not die these days from depending on when they get their first hydatidiform mole or invasive mole normal result. If you need treatment, and only extremely rarely from you will be followed up indefinitely to choriocarcinoma. confirm that your hCG levels remain normal. I feel different, having had a hydatidiform mole. Do I really have to wait Is this normal? before trying for another This is a very common feeling. There is baby? nothing abnormal about the mole For complete and partial moles, the tissue itself. Trophoblastic tissue is advice is yes . You should wait until found in all pregnancies and is normal. follow-up is complete to allow time A mole is different only because the for any hidden cells from the mole to growth of the trophoblast was not start to grow again. “switched off” at the right time. It was If there are any hidden cells, then your a pregnancy which did not have a baby hCG levels will rise and you will be to control it. given treatment to kill the cells. Was I ever pregnant? A new pregnancy could mask the re- Should I be grieving? growth of molar cells and make them very difficult to detect and treat. You had the beginnings of a pregnancy which, sadly, could never develop or It may feel like a long time to wait, but survive. Many women feel a real sense it is to make sure that you are safe. of loss for the baby that might have been. Others prefer to think of it as not being a baby at all. There are no right and wrong feelings, just what you feel yourself.

12 Can I go on the Pill while I Am I more likely to have a am being followed up? miscarriage next time? Yes. We used to advise women not to We don’t know for sure, but the use the contraceptive pill during answer is “probably no”. follow-up, but research has shown this isn’t necessary. If I need chemotherapy, will it affect my baby in a future What other contraceptives pregnancy? can I use? You will be advised to wait for one The condom together with spermicide year after you have finished your is suitable and highly effective when treatment before trying to conceive. used as advised. After that, your baby will not be The coil (IUCD) is best avoided until affected by your having had your hCG levels are normal; and the chemotherapy. cap may be problematic as your Can I do anything to reduce measurements may change. the risk of another molar In the meantime you can get further pregnancy? advice, and supplies, from your GP or local Family Planning Clinic. Not as far as we know. A molar pregnancy is a chance event, not Will I be able to get something you have any control over. pregnant again? Can my partner catch You should be able to. A molar anything from me because I pregnancy does not affect your fertility have had a molar pregnancy? at all and many women have gone on to have babies following a molar No. A hydatidiform mole carries no pregnancy. risk to your partner.

Will I have another molar pregnancy? It is possible but very unlikely. The general risk of molar pregnancy is around one in 600. If you have had a mole, your chance of having another is around one in 100. If you have two molar pregnancies, your chance of a third is around one in 7.5. There is an excellent chance that you will have a perfectly normal pregnancy next time.

13 Finally Information and support The experience of hydatidiform mole can be very distressing. Not only have The Miscarriage Association you experienced a miscarriage but you has a telephone helpline, a volunteer also need to be in continued medical support service, an online support follow-up to have your hCG levels forum and a range of helpful leaflets checked. on pregnancy loss. This can mean a lengthy time of Helpline: 01924 200799 anxiety and worries for the future. www.miscarriageassociation.org.uk It can also feel as if you are “in limbo”, 17 Wentworth Terrace, Wakefield unable to move on after this WF1 3QW pregnancy and having to delay trying You may also find some of the again. You may find that family and following websites helpful: friends don’t understand what you are www.molarpregnancy.co.uk going through and this can make you feel quite lonely and isolated. www.hmole-chorio.org.uk www.chorio.group.shef.ac.uk You may find it helpful to talk to someone who can answer your questions and provide support. The Charing Cross, Weston Park and Ninewells centres each have a counsellor attached to the follow-up service. Just contact the centre where you’re registered and they will put you in touch with the counsellor.

My advice to anyone going through this is to “ speak to your follow-up centre. They are all specialists and amazingly helpful. Don’t be afraid

to ask questions. I found that understanding the

whole process, from how a mole is formed right through to the worst possible outcom“ e, was a huge comfort. Understanding what it all meant gave me back a bit of control.

14 Thanks Our sincere thanks to the following The molar people: “ pregnancy experience is • Mrs Delia Short, Service Manager/ certainly scary and Co-ordinator, Trophoblastic Tumour it can be lonely at Screening and Treatment Centre, Charing Cross Hospital, for her times as it’s so rare. help and advice on the leaflet But there are content; people out there who have had it or • Dr Rosemary A Fisher, Honorary are going through Consultant Geneticist, Trophoblastic it and that helps. Tumour Screening and Treatment Although it can

Centre, Charing Cross Hospital, for seem that there’s

allowing us to use her illustrations; no end to the • the women who shared their own testing, I already “ experiences of molar pregnancy. see light at the end of the tunnel.

Need to talk to someone who understands? Call our support line on 01924 200799. Monday to Friday, 9am-4pm Or email [email protected]

15 The Miscarriage Association 17 Wentworth Terrace Wakefield WF1 3QW Telephone: 01924 200799 e-mail: [email protected] www.miscarriageassociation.org.uk

© The Miscarriage Association 2013 Registered Charity Number 1076829 (England & Wales) SC039790 (Scotland) A company limited by guarantee, number 3779123 Registered in England and Wales

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