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Phonecall that brought really bad news for my sister

43 replies

jenk1 · 01/04/2006 19:25

I took a phonecall yesterday from my sisters consultant at the hospital, inbetween xmas and new year she had a miscarriage and they had her in for tests as she was still having pains.

Consultant sounded really panicky and said it was urgent that my sister ring her today so i went to where she works and told her.

She came to my house an hour later in floods of tears, the consultant told her that they cannot find her left ovary and that there is a growth and that the blood tests she has got back are making her really worried, my sister asked her "are you telling me i have cancer"? the Consultant said "yes im certain that it is, ive booked an emergency appointment for you to see a specialist at St Marys hospital in Manchester first thing on Monday morning. Sad

I dont know *anything about ovarian cancer or what to say to her, my mum is distraught, im shocked, my other sister feels numb, i dont know how to help her, she doesnt want anyone to go with her to the appointment on Monday, says she wants to go on her own. Sad

OP posts:
jenk1 · 02/04/2006 22:23

Me and my sister have just spent an hour trying to get her to let someone come with her but she,s absolutely adamant.

She says she wants to go, find out the news for herself and then she can think.

She says if someone goes with her she will be more worried about them being upset and she doesnt want that.
So, ill wait by the phone tomorrow morning.

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SorenLorensen · 02/04/2006 22:42

I'm so sorry, jenk, what dreadful news. I guess you can only respect her wishes about going alone - is she going to drive, or can you persuade her to take a taxi?

PutAPeachyInYourSimnelCake · 03/04/2006 09:30

You know Jenk, I'd handle it that way too. i think some people need to do things themselves first. It doesn't mean you can't support later.

I would spend the day getting as much information as ossible to back up whatever she gets. Find out if there is a patient support group, Macmillan Nurse, information centre lovcally, then get everything you can sent to you from each of the major charities. Information is power, I have always believed that.

And remember that as her family YOU need support too, it's likely to be a tough time for you all even if (as hopefully is possible as they caught it as a result of something else) it's a bestc ase scenario. Don't let yourself go now, get yourselves fit for battle.

jenk1 · 03/04/2006 09:50

Last night she told us more info she said that on her right ovary there is a growth that has grown to 5cm and they cant find her left ovary dont have a clue what this means.

If anyone knows can they say as i want to know whats the worse case senario, my mum is refusing to talk about this and my other sister and me are the ones that are going to have to be tough i can see, also my sister doesnt tell us everything, she told us last night that the hospital has been suspecting Cancer for a month now and have been doing tests/scans for a while, well we didnt know anything about this and she probably wont tell us everything thats been said today BUT, she,s not the type of person who will accept support and she needs it especially as she has a 14year old daughter who knows something is going on.

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fairyjay · 03/04/2006 10:13

You must be having a vile morning - thinking of you and your ds.

ToujoursMarine · 03/04/2006 10:16

jenk1, I am really so sorry. My sister had a differently dreadful weekend too and prefers to handle it all by herself, I know how hard it is when you love someone very much and they love you, but don't want your help.
Thinking of you all this morning :(

Twiglett · 03/04/2006 10:19

thinking of you and your sister .. I hope you find a way to support her that helps you both

I am at a loss for words .. but didn't want to ignore your thread

Blu · 03/04/2006 10:23

My thoughts with you too, Jenk. Terribly sorry to hear this news.

I can sort of see that she is protecting herself a little by doing this on her own - sometimes it's harder to hold firm when you have the option of collapsing on someone - her times for feeling like leaning on your shoulder will come, and she will need you, more than anything.

Blu · 03/04/2006 10:23

My thoughts with you too, Jenk. Terribly sorry to hear this news.

I can sort of see that she is protecting herself a little by doing this on her own - sometimes it's harder to hold firm when you have the option of collapsing on someone - her times for feeling like leaning on your shoulder will come, and she will need you, more than anything.

georginarf · 03/04/2006 10:31

Thinking of you Jenk1. And I have to say, my sister would rather do anything like this on her own too, and it is very difficult for family/friends.

I can't tell you for definite what they mean at the moment, and she's obviously not telling you the whole story as well. but if it is diagnosed as cancer \link{http://www.ovacome.org.uk\this site} is very useful. I can say that the size of the growth by itself is no indication of whether it's cancerous or not. And there is a 'borderline' category which is sort of cancerous but doesn't spread. The site lists all the types and stages of cancer, once she's been told something like that it'll make more sense to you and should help explain what she has.

I don't know exactly what they mean about not being able to find the left ovary, but I do know that this happened to me with my remaining ovary, they thought it was hidden in another growth and prepared me for bad news, but it turned out (when they did a laparoscopy) that my ovary and tubes were all stuck together. This obviously won't necessarily be the same for her, but I think it illustrates that it can be very hard to tell exactly what's going on from scans. Until they get in there and have a look and biopsy it I doubt they can tell her exactly what's up.

This is a ramble, but just wanted you to know that people are thinking of you

batters · 03/04/2006 10:33

This reply has been deleted

Message withdrawn at poster's request.

hulababy · 03/04/2006 10:34

Thinking of you.

noddyholder · 03/04/2006 10:37

I sympathise with your sister as I sometimes deal with things like that.It must be so hard for you all but it is important that she dos things her way to start with although one thing I would say is that she may need someone to take in what the dostors are telling her as I had a malignancy diagnosis once in 2001 and I had to go back with dp as I was in the consultants office for over 40 mins and came out none the wiser and with no news for anyone as I was in a bit of a daze.For now it is prob enough for her to know you are all there for her and her daughter I am sending you positive vibes today xx

PutAPeachyInYourSimnelCake · 03/04/2006 10:53

»Home »Cancer Info »Your Cancer »Ovarian Cancer printable page

Ovarian cancer affects some 7000 British women every year and 165,000 new cases are diagnosed every year, worldwide. Worldwide, ovarian is the sixth most common form of cancer. It develops mostly in women over 55, and half of all cases occur in women of 65 plus, although one in ten patients will be under 45.

Ovarian cancer affects some 7000 British women every year Once known as the "silent killer" (because it gives few, if any, warning signs at the early stage when treatment can be successful) ovarian cancer is perhaps more usefully described as the "whispering" disease, because women who listen to their bodies may pick up possibly life-saving signs. These include:

Pelvic or abdominal discomfort and pain
Cramps
Bloating or swelling
Loss of weight or appetite
Fatigue
Breathlessness
Backache
Urinary problems
Unexplained changes in bowel habits
Unusual vaginal bleeding
Your chances of contracting ovarian cancer are reassuringly small, but any woman noting several of these signs, should consult her GP. Seventy per cent of women diagnosed with ovarian cancer present with disease that has already spread beyond the ovaries, which is why the overall five-year survival rate is only 28 per cent. It can be as high as 90 per cent for those of the 2000 British women diagnosed early every year.

Risk Assessment
Certain risk factors have been identified for the most prevalent form of ovarian cancer, known as epithelial. Much less is known about the rare germ cell and stromal ovarian tumours. Women who have no children are more likely to have this cancer, and women who start a family after 30 also have a slightly greater risk. Menstruation patterns are also implicated - more monthly periods may increase the risk; women who began their periods before the age of 12, who had a late menopause and did not breastfeed may also have a higher risk.

Women who have no children are more likely to have this cancer Dr David Guthrie, consultant clinical oncologist at the Derbyshire Royal Infirmary, stresses that childbearing patterns and ovarian cancer are markedly linked: this cancer is rare in the now scant number of women who have had four or more pregnancies. The unfashionable message seems to be that falling birth rates are bad for ovarian health. Women who have had breast cancer are more likely to develop ovarian cancer and chlamydia has also been linked.

Family Links
A woman with two or more close relatives with ovarian cancer, or one with this cancer and another with breast cancer diagnosed before she was 50, has a strong family history and carries a greater risk. In the past few years scientists have learned much more about genetic predisposition to this form of cancer.

The BRCA1 and BRCA2 genes which women can inherit from their parents are designed to prevent cancer by making proteins to inhibit abnormal cell growth.

Mutations on these genes can make the protein less effective but are thought responsible for less than 5 per cent of ovarian cancer overall. The lifetime risk for women with either of these two mutations rises to something between 17 and 44 per cent.

Lowering the Risk
Despite its vexed reputation for women's health overall, the birth control pill actually lowers the risk for ovarian cancer in women who have taken it for five years. After ten years, says Dr David Guthrie, the risk reduction is a marked 50 per cent.

Women who have undergone tubal ligation to prevent pregnancy or had a hysterectomy also seem to have lowered risk, though this is not a reason for choosing surgery.

The American Cancer Society recommends a diet high in fruits vegetables and wholegrain with a limited intake of red and processed meats. There's been some suspicion that the use of talcum powder in the genital area could double the risk of ovarian cancer: two out of nine studies suggested a significantly raised risk and another five a slightly increased risk

Screening
Internal examinations can only detect large ovarian tumours. Regular smears only rule out cancer of the cervix. But a study of over 5000 women at King's College confirmed that ultrasound could detect many cases of ovarian cancer at an early stage. Another study at the Royal London and Baits Hospital looked at ultrasound combined with a blood test for protein levels of CA125 (which is raised in women with ovarian cancer).

The conclusion was that this dual screening enabled many cases to be detected before any symptoms developed. The problem with screening, however, is that false positives are common and false negatives also occur. Medics have also yet to establish beyond any doubt that screening would actually save lives.

Internal examinations can only detect large ovarian tumours To that end a massively ambitious, randomised UK trial (UKTOCS) is under way involving 200,000 women between 50 and 74 at 13 regional centres.

Before seeking screening even women with a strong family history should seek expert advice - the fact that you have undergone genetic testing could, for instance, affect your life insurance cover.

Treatment
Ovarian cancer usually begins with a laparotomy to establish the site and scale of the problem. A complete hysterectomy will usually be recommended, followed by chemotherapy.

A huge international study of 477 women with early ovarian cancer from 84 centres in five countries concludes that Carboplatin is the gold standard chemotherapy for these particular ovarian cancer patients.

Dr David Guthrie explains that even if surgery appears to remove all visible evidence of ovarian cancer, some microscopic deposits may persist and cause a recurrence in about a third of patients diagnosed at an early stage.

The key question for oncologists has been whether to wait, see and give chemo only when a recurrence is found, or to give it routinely after surgery. This recent trial however suggests that survival is increased by 9 per cent if Carboplatin is given within six weeks of surgery.

jenk1 · 03/04/2006 14:15

Well. she phoned me about half an hour ago.
They are going to operate on 09May and remove one of her ovaries, they have asked her to sign her consent that if it has spread that they can do a hysterectomy which she has.

She,s still not telling everything but i respect her wishes in that dept.

She will be in for a week and has to have 2 months off work sick.

She said that they will show her file to another expert and if he says so then they will operate next week so a bit confused.

They dont know if its benign or not (so she says)

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georginarf · 03/04/2006 14:21

Jenk1
Oh the poor thing having to wait til 9 May....am guessing that the other expert will say if he thinks it's necessary to do it quicker then it'll be next week. Sounds mad I know, but the fact that they will wait til May is probably a good sign. I know I was operated on more or less immediately. They probably really don't know for sure about whether it's malignant/benign until they operate as the blood test results can, I believe, be quite misleading in some cases.

PS I think the signing for a hysterectomy is standard - I had to sign that form too and it was horrible and very upsetting (was only 27 and no kids)

PutAPeachyInYourSimnelCake · 03/04/2006 17:44

I would go with what georginarf says, that's my impression too

batters · 04/04/2006 20:07

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