9828 ma preg loss - home - the miscarriage association · 2017-12-28 · molar pregnancy some women...

Molar pregnancy

(hydatidiform mole)

45323_MolarPregnancy_MH.qxp_9828 MA preg loss 28/11/2016 13:38 7

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My doctor didn’t seem to know what hydatidiformmole was. I looked it up on the Internet and nearlyscared myself witless.

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

You may never have heard ofthis condition and peoplearound you probably won’thave either. You might wellbe feeling confused, upsetand anxious – perhapsespecially if you have beensearching on the Internet.

And of course, you may alsobe grieving for the loss ofyour baby.

In this leaflet, we aim to explain:

• what a hydatidiform mole is

• why follow-up is necessary and

• what that follow-up involves.

We will also look at some of thethoughts, feelings and reactions ofother women and their partners whohave been through molar pregnancythemselves.

We have written this leaflet for women and their partnerswho have been affected by a molar pregnancy (also called ahydatidiform mole).1

45323_MolarPregnancy_MH.qxp_9828 MA preg loss 28/11/2016 13:38

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What is a hydatidiformmole? What does itmean?

Hydatidiform mole is a medical termwhich means a fluid-filled mass of cells(mole = a mass of cells; hydatid =containing fluid-filled sacs or cysts).

In a molar pregnancy, an abnormalfertilised egg implants in the uterus(womb).

The cells that should become theplacenta grow far too quickly and takeover the space where the embryowould normally develop. Those cellsare called trophoblasts. That’s whymolar pregnancy is sometimes called‘trophoblastic disease’.

The hydatidiform mole itself is one of a group of rare conditions calledgestational trophoblastic tumours(gestational means in pregnancy).

Any mass of cells can be called atumour. That doesn’t necessarily meanit is malignant (cancerous); manytumours are benign (harmless).

About one in 600 pregnancies is amolar pregnancy. That means it is quiterare, especially compared withmiscarriage, which affects around onein four pregnancies.


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A hydatidiform mole may be either partial or complete, depending on thegenetic make-up of the fertilised egg. The easiest way to explain this is to lookfirst at what happens in a normal conception.

Normal conception

Each of our cells contains 23 pairs of chromosomes, where one of each pair isfrom the mother and the other from the father.

In a normal conception, a single sperm with 23 chromosomes fertilises an eggwith 23 chromosomes, making 46 in all.

Partial mole

In this situation, two sperm fertilise the egg instead of one, creating 69 instead of46 chromosomes. This is called a triploidy. There is too much genetic materialand the pregnancy develops abnormally, with the placenta outgrowing the baby.

There may be evidence of a fetus but it will be abnormal and cannot survive.

There have been some (very few) reports of live babies born after what wasthought to be a partial mole, but this may have been the result of an extremelyrare condition where a normal baby has a mole for a “twin”.

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Other complications

In a normal pregnancy, the trophoblastinvades, or burrows into and throughthe lining of the uterus. However, inabout 14% of complete moles and 1%of partial moles the trophoblast notonly grows very quickly, but alsoburrows more deeply into the uterusthan it should.

In these rare cases, the trophoblastcells can become malignant(cancerous) and invade and spread toother parts of the body. This is calledinvasive mole. If it is not treated,it can develop intochoriocarcinoma.

This is an extremely rare complicationof hydatidiform mole.

Choriocarcinoma more often arisesfrom other types of pregnancy and itaffects one in 50,000 pregnancies.

The very small risk of developinginvasive mole or choriocarcinoma isthe reason that molar pregnancies arefollowed up. It is also the reason thatthe follow-up centres are located inunits dealing with cancer (oncology)or trophoblastic tumours. They candetect trophoblastic disease very earlyand the cure rate is almost 100%.

You can read more about the follow-up procedure on page 9.

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Complete mole

A complete mole is when one (or even two) sperm fertilises an egg cell whichhas no genetic material inside. Even if the father’s chromosomes double up tomake 46 in all, the balance of chromosomes from the mother and father iswrong.

Usually the fertilised egg dies at that point but in rare cases it goes on to implantin the uterus. When it does, no embryo grows, only the trophoblast (the cellsthat will become the placenta) and that grows to fill the uterus with the molar


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The level of hCG in mybody was far beyondanything normal. That explained why I had been feeling sounwell.

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Signs and symptoms ofmolar pregnancy

Some women will have no noticeablesymptoms of molar pregnancy, or mayrecognise them only after they havebeen diagnosed.

This is because most of the symptomsare due to very high levels of thepregnancy hormone hCG (humanchorionic gonadotrophin), so they canbe very like the usual symptoms ofpregnancy or miscarriage.

If you have never been pregnant, orhave not had particularly strongpregnancy symptoms before, it can behard to know what is normal andwhat isn’t.

Signs and symptoms are mainly:

• Missed period/s and a strong positive pregnancy test

• A lot of nausea (feeling sick) or vomiting. This can be very troublesome

• Irregular bleeding from the vagina. The blood may contain little fluid-filled cysts (like tiny grapes)

• Symptoms like those of a miscarriage, including pain and bleeding

Your doctor may notice other changesthat suggest molar pregnancy:

• Your uterus may be larger than expected from your dates

• Your ovaries may be enlarged (due to the high levels of hCG)

• You might have high blood pressureand protein in your urine, though this is rare.


Diagnosing molarpregnancy

After a miscarriage

Most cases of molar pregnancy arediagnosed after what appears to be a“normal” miscarriage where thewoman has had surgical managementof her miscarriage. You might hear thisprocedure referred to as an ERPC, an“evac” or a D & C.

In most hospitals, a sample of thetissue that is removed is sent to thelaboratory and tested to see if it isnormal pregnancy tissue. (This processis called histology and you may beasked to give your permission). Thisexamination can identify molar tissueand thus a molar pregnancy.

There may be a delay between whenyou have the surgery and when youare told that you have (or might have)a molar pregnancy. It may be somedays or a few weeks after yourmiscarriage when you are contactedby letter or telephone. You may beasked to return to see the doctorbefore you are told any more.

In pregnancy

In some cases, the GP or hospitaldoctor might suspect a molarpregnancy. If so, s/he might refer youfor one or more of the following:

• A blood test, to measure your hCGlevels (this might be done more than once over a few days)

• An ultrasound scan (unless you have just had one)

• An appointment with a hospital gynaecologist or Early Pregnancy Unit

If your doctor diagnoses or stronglysuspects a molar pregnancy s/he willrecommend that you have surgery toremove any pregnancy tissue. Thediagnosis will then be confirmed bylaboratory examination.

It is very important that youunderstand that this process is nota termination of pregnancy (anabortion). In most cases there neverwas an embryo or it died at a veryearly stage, and even in a partial moleit will not develop. Even so, you maystill feel a sense if loss for what wouldhave been your baby.

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I thought nothingcould be moredevastating thanlosing a baby, untila month later whenthey told me it wasa partial molarpregnancy.

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“It was painful torealise that for allthese weeks therewasn’t a babygrowing inside me.It felt like we hadbeen tricked.

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It is now nine weeks since I lost my baby and mylevels have not yet dropped to normal, so I havemissed the short follow-up.

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What happens next?

All women who are diagnosed withmolar pregnancy are followed up tocheck that their hCG levels drop backto normal.

The hCG levels are tested every twoweeks on samples of blood (serum)and/or urine. The results are reportedas IU/L, which means InternationalUnits of hCG per Litre. The normalserum level is 4 IU/L or less and thenormal urine level is 24 IU/L or less.

• In most women, the hCG levels drop fairly quickly. If you have a complete mole and your serum hCG drops to normal (4 IU/L or less) within eight weeks, you will then be followed up for a total of six months from the date ofyour miscarriage surgery.

If it takes longer than eight weeks,then you will be followed up for sixmonths from your first normal serumhCG.

If you have a partial mole, confirmedon review at your follow-up centre,you will be followed up until yourserum hCG returns to normal,confirmed with a urine sample fourweeks later.

You will be advised not to get pregnant while you are still in follow-up.

If your hCG level:

• doesn’t fall to normal or

• stays the same for three successive samples or

• starts to rise again

then your doctor will recommendtreatment.

About one in ten women needadditional drug treatment(chemotherapy) to kill off anyremaining molar cells.

Treatment is very effective and willnot normally affect your chances of having a child in the future.


Who does the follow-up?

Depending on where you live, yourfollow-up will be done at one of thethree specialist centres in the UK:

• Charing Cross Hospital in London

• Weston Park Hospital in Sheffield or

• Ninewells Hospital Dundee

You are unlikely to have to go thereyourself, as they will arrange for yourlocal hospital or clinic to take bloodsamples and to send these on.

They will send your test results toyour GP and your hospital doctor, butyou can also contact them directly andthey will tell you the result and howyou are doing.

The procedure may vary a littlebetween the three centres, but not agreat deal. As most women arefollowed up by Charing Cross Hospitalin London, we describe theirprocedure here:

1. You will receive a letter from the follow-up centre telling you that you have been registered for the follow-up programme.

2. A few days later you will receive a small box or packet containing a letter for your local hospital or clinic and a small tube or tubes foryour blood and urine samples.

3. On the date requested, you collecta sample of your first urine of the day and place this is the small tube.You then attend the hospital or clinic for a blood test, and the blood will be put into a second tube.

4. You put both tubes in the box or packet that you received, along with a form on which you give details of your last period and any drug treatment you are having. You then close and post the packet(no stamp is needed).

5. Once your blood tests are normal, you will only need to send a urine sample, so you can send them fromhome, without having to go to the hospital or clinic.

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I was monitored for six months and thankfully mylevels went down quickly. I also attended one of thesupport group sessions at Charing Cross Hospital,which was very helpful.

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What if I have aninvasive mole ordevelopchoriocarcinoma?

The chances of you having an invasivemole or developing choriocarcinomaare really very small. But if you dohave either, the staff at your follow-upcentre will give you clear advice andguidance.

They will tell you if you need furtherinvestigations, such as ultrasound, X-ray, CT or MRI scans.

You will have your treatment in eitherCharing Cross or Weston ParkHospitals.

Drug treatment (chemotherapy) isvery effective. Once it has beencompleted successfully, you will beadvised to wait one year afterchemotherapy treatment before tryingfor another pregnancy.

There is no increased risk of having anabnormal baby because of thechemotherapy.

Even having a tiny risk of developing cancer isterrifying, especially when it has all stemmed fromsomething as happy and pure as trying to have ababy.

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When I first realised I would have to wait (beforetrying again), I cried for about a week. Life seemedso unfair and to have no control over when I couldtry for a baby was awful. I now feel much betterand stronger. I would rather be safe and well formy 3 year old daughter than risk damaging myhealth.

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How can I best helpmyself?

• Always send the samples requested on the date requested – don’t put itoff!

• Make sure that your urine samples are the first urine of the day, as this is when hCG levels are at theirmost concentrated (just like when 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 increasinghCG levels are from the pregnancy or from molar tissue growing again.

• If you do become pregnant, it is very important to tell the follow-upservice.

• After your miscarriage surgery, you can use the contraceptive pill even before your hCG returns to normal.

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Frequently askedquestions

Do I have cancer?

If you have a hydatidiform mole thathas gone without needingchemotherapy, then you do not havecancer. A very small proportion ofmolar pregnancies can develop into aninvasive mole or choriocarcinoma,which is a form of cancer. Fortunatelyit is a cancer with an almost 100%cure rate.

Am I going to die?

Women do not die these days fromhydatidiform mole or invasive moleand only extremely rarely fromchoriocarcinoma.

I feel different, having had a hydatidiform mole. Is this normal?

This is a very common feeling. There isnothing abnormal about the moletissue itself. Trophoblastic tissue isfound in all pregnancies and is normal.A mole is different only because thegrowth of the trophoblast was not“switched off” at the right time. It wasa pregnancy which did not have a babyto control it.

Was I ever pregnant? Should I be grieving?

You had the beginnings of a pregnancywhich, sadly, could never develop orsurvive. Many women feel a real senseof loss for the baby that might havebeen. Others prefer to think of it asnot being a baby at all. There are noright and wrong feelings, just what youfeel yourself.

Will I have normal periodsduring follow-up?

It may take a while for your periods toget back to normal. Some women findthat they have heavier periods for thefirst month or two but this usuallysettles down.

How long will the follow-uplast?

Follow-up for a partial mole might beas short as two to three months fromthe date of your miscarriage surgery.However, some women will continuefollow-up for longer than this,depending on when they get their firstnormal result. If you need treatment,you will be followed up indefinitely toconfirm that your hCG levels remainnormal.

Do I really have to waitbefore trying for anotherbaby?

For complete and partial moles, theadvice is yes. You should wait untilfollow-up is complete to allow timefor any hidden cells from the mole tostart to grow again.

If there are any hidden cells, then yourhCG levels will rise and you will begiven treatment to kill the cells.

A new pregnancy could mask the re-growth of molar cells and make themvery difficult to detect and treat.

It may feel like a long time to wait, butit is to make sure that you are safe.

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Can I go on the Pill while Iam being followed up?

Yes. We used to advise women not touse the contraceptive pill duringfollow-up, but research has shown thisisn’t necessary.

What other contraceptivescan I use?

The condom together with spermicideis suitable and highly effective whenused as advised.

The coil (IUCD) is best avoided untilyour hCG levels are normal; and thecap may be problematic as yourmeasurements may change.

In the meantime you can get furtheradvice, and supplies, from your GP orlocal Family Planning Clinic.

Will I be able to getpregnant again?

You should be able to. A molarpregnancy does not affect your fertilityat all and many women have gone onto have babies following a molarpregnancy.

Will I have another molarpregnancy?

It is possible but very unlikely. Thegeneral risk of molar pregnancy isaround one in 600. If you have had amole, your chance of having another isaround one in 100. If you have twomolar pregnancies, your chance of athird is around one in 7.5.

There is an excellent chance that youwill have a perfectly normal pregnancynext time.

Am I more likely to have amiscarriage next time?

We don’t know for sure, but theanswer is “probably no”.

If I need chemotherapy, willit affect my baby in a futurepregnancy?

You will be advised to wait for oneyear after you have finished yourtreatment before trying to conceive.After that, your baby will not beaffected by your having hadchemotherapy.

Can I do anything to reducethe risk of another molarpregnancy?

Not as far as we know. A molarpregnancy is a chance event, notsomething you have any control over.

Can my partner catchanything from me because Ihave had a molar pregnancy?

No. A hydatidiform mole carries norisk to your partner.

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Finally

The experience of hydatidiform molecan be very distressing. Not only haveyou experienced a miscarriage but youalso need to be in continued medicalfollow-up to have your hCG levelschecked.

This can mean a lengthy time ofanxiety and worries for the future. It can also feel as if you are “in limbo”,unable to move on after thispregnancy and having to delay tryingagain. You may find that family andfriends don’t understand what you aregoing through and this can make youfeel quite lonely and isolated.

You may find it helpful to talk tosomeone who can answer yourquestions and provide support. TheCharing Cross, Weston Park andNinewells centres each have acounsellor attached to the follow-upservice. Just contact the centre whereyou’re registered and they will put youin touch with the counsellor.

Information andsupport

The Miscarriage Association

has a telephone helpline, a volunteersupport service, an online supportforum and a range of helpful leafletson pregnancy loss.Helpline: 01924 200799www.miscarriageassociation.org.uk17 Wentworth Terrace, Wakefield WF1 3QW

You may also find some of thefollowing websites helpful:

www.molarpregnancy.co.uk

www.hmole-chorio.org.uk

www.chorio.group.shef.ac.uk

My advice to anyone going through this is tospeak to your follow-up centre. They are allspecialists and amazingly helpful. Don’t be afraidto ask questions. I found that understanding thewhole process, from how a mole is formed rightthrough to the worst possible outcome, was ahuge comfort. Understanding what it all meantgave me back a bit of control.

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Thanks

Our sincere thanks to the followingpeople:

• Mrs Delia Short, Service Manager/ Co-ordinator, Trophoblastic TumourScreening and Treatment Centre, Charing Cross Hospital, for her help and advice on the leaflet content;

• Dr Rosemary A Fisher, Honorary Consultant Geneticist, TrophoblasticTumour Screening and Treatment Centre, Charing Cross Hospital, forallowing us to use her illustrations;

• the women who shared their own experiences of molar pregnancy.

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Need to talk to someone who understands?

Call our support line on 01924 200799. Monday to Friday, 9am-4pm

Or email [email protected]

The molarpregnancyexperience iscertainly scary andit can be lonely attimes as it’s so rare.But there arepeople out therewho have had it orare going through it and that helps.Although it canseem that there’sno end to thetesting, I alreadysee light at the endof the tunnel.

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© The Miscarriage Association 2016Registered Charity Number 1076829 (England & Wales) SC039790 (Scotland) A company limited by guarantee, number 3779123Registered in England and Wales

HMole/11/16

The Miscarriage Association17 Wentworth TerraceWakefield WF1 3QWTelephone: 01924 200799e-mail: info@miscarriageassociation.org.ukwww.miscarriageassociation.org.uk


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