Hello, this is my first question on this site, I've been reading in since last week.

[shellbell]

I may be premature, but I'm scared and have no-ne to discuss this with. Husband is being strange with me so we're not talking at the moment. I have two lovely little boys 1 and 4 and I'm really scared for them, they need a mum.

I was diagnosed with a large fibroid on the outside of my uterus in 2005 by laporoscopy. Since then I have had 3 pregnancies, the first was a miscarriage. During all this time this fibroid was scanned, measured and discussed. It was about 12cm x 12cm last time it was measured during last pregnancy. One scan showed it had become full of small cysts but it had always been solid. Since I had my last son over a year ago, by c-section, fibroid has started giving me symptoms - incredible pain lasting 4/5 days gradually getting worse, pain down into my leg like sciatica, trouble walking long distances, I can't fill my bladder and don't have full control and bowel leakage. Always a sense of pressure and my stomach is huge, I look 9 months pregnant which I put down to torn muscles after having a big baby. I have seen GP and gynae x2 about symptoms, given the option of hysterectomy or embolisation. No real rush, waited a year to get to the stage of being sent for an MRI after I decided on embolisation. Had MRI with dye 2 weeks ago and it seemed to take a long time. They were taking picture after picture, I was in the machine about 40 minutes. I then waited for the appt for the actual embolisation but instead received a letter from the gynae who said that actually, the mass on the left of my uterus is not a fibroid but is more likely to be related to my ovary. Could I please pop along to the GP and get a CA-125 blood test and an appt would follow. Well, I am so confused. I had the blood test last Thursday and I haven't had the results back yet. I received an appt with gynae for the middle of Jan, again, no rush. Husband rang gynae dept to move appt forward and was told that gynae had asked for my notes yesterday and would be calling me. She must be waiting for blood results before calling. What I don't understand is how this large mass could have been treated as a fibroid for so long when in fact its most likely to be a tumour?? The doctor who did my c-section gave the first clue when he told us the "fibroid" was not attached to my uterus but to my broad ligament. When I visited gynae after this asking her to remove it she said he was wrong, fibroids are always attached to the uterus. But its not a fibroid, how could they be so wrong? I'm so scared of what I'm about to be told, I know its probably not going to be good news. Help?

[Hidden]

Hi,

Sorry you are having such a frightening and painful time!

To be fair; you are not a typical candidate for ovarian cancer as it is more often associated with childless women of menopausal age, and that is very much how it is still thought of by GPs. Having said that, it seems that they are alert ot the possibility now. The blood test takes less than 24 hours, so the result should be available to your GP. Ring and ask for it. If it is elevated, remember there could be other reasons, but you then need to press for an early appointment. Don't be obedient and wait around.

If it is cancer you need a swift response and you are young, so have a good chance of recovering well. There is a lot you can do to make sure you will be here to look after your children- stick with us, and we'll help.

First; get the answers you need.

Very best wishes,

Isadora

[charlie12]

Hi there

Again,so very sorry that this has happened to you at such a young age and with such a young family.Poor thing, of course you are scared, with your two little boys.

Just to say that the word "tumour" does not necessarily mean that the mass is an invasive cancer that may limit your life.When referring to ovarian issues the words "tumour" and "cyst" are inerchangeable. We all get scared when we hear the word tumour and this should be explained but is frequently not.

I had similar confusion about what looked like a single mass, which was actually a large borderline ovarian tumour and a large family of fibroids hiding behind it. MRI scans I understand give a very large amount of detailed information and in the two them I had I was in the horrible tube for 40 minutes plus on both occasions.

This business of consultants saying they will call you back and not doing it is appalling, it really is. Also, your blood test results should be available by now, so call and keep calling the consultant's secretary today untill she speaks to you. Getting your husband to call again is a good idea. However in reality when there is really something of great concerns, things do get moving very quickly.

I had surgery to remove my bits and pieces nearly two years ago, but did not need chemo or radiotherapy. It is a major operation but is doable. I am fine now and even if you do have something worse, so much can be done now. There are many many ladies on here who have had malignant tumours who have done really well.

I do hope you get some answers today and let us know how you get on.

Take care

Big hug

Charlie xx

[ChrisH]

Hi

If it's any help, I have a friend with fibroids, she has terrible pains and bloating, usually just before her period. I would have expected the consultant doing your c-section would have recognised cancer if it was present then, though no guarantees. When I was diagnosed, my GP sent me to A & E for tests, thinking it could be one of several things. The gynaecologist saw me 2 days later with a diagnosis.The CA125 takes 24 to 48 hours for the results to be received and looked at by the consultants, so I would phone and keep on to them. Bear in mind the results are not conclusive, ovarian cysts and other things can give a high reading,

When you see the gynaecologist, if you can, don't go on your own, take either your husband or someone else you trust, and ask them to take notes. This way you can talk through what is said as many times as necessary. I don't know how many times I discussed the same details just on the way to the car! It is normal to latch onto one word, and not take in the rest. If you don't understand something, ask as many question as you need to.

I really hope you dont have anything to worry about but something to bear in mind, despite having stage 3 cancer, I am feeling better now than I have in over a year, I had a full hysterectomy in July, with 6 chemo sessions, 3 either side of the op. My last chemo was early September, and I am now swimming (400m) around 4 or 5 times a week.

Good luck

Chris h

[maggie11]

It is 35 years since I had oc at the age of 26. Treatment has changed out of all recognition since then, I had an operation for ovarian cysts and it was discovered to be cancer during op. I was told it was becoming invasive and I had to have pelvic radiotherapy or I could be dead in 5 years. I did as I was told. It was'nt easy going through acute menopause at 27 but I survived and as you can see am still here. I now have 2 grown up adopted daughters whom I wouldn't change for anything. Life has been a hard task master at times but I am so luckly to have survived and I feel, so lucky to have experienced all that I have.

I am sharing this with you because I have never forgotton how frightened I was. I had symptoms for about 9 months before the oc was discovered so you see it just depends what sort of cancer you have, even if it is that. Personally, my symptoms were far less specific than you describe, acute pain with ovarian cysts I believe is more likely for other reasons.. However, you need to keep pushing until you get this sorted. You can always go to casualty complaining of pain and they will have to take notice. That's what I had to do.

Men do get really wierd at times like this, he is probably really worried and wants to try to not think about it, doesn't know what to do or say. It doesn't help I know but I think that behaviour is quite common.

Fingers crossed your fears are groundless but if not, believe, there are so many wonderful women on this site, who have survived far more than I had to who will support you. love and best wishes maggiexx

[AngelaAbell]

I am so sorry that you are having sucha horrible time. Being in pain, frightened and confused is always horrible but with two very small children to care for and worry about it must be hard to keep going. It doesn't sound as if you have had the most sensitive treatment from the medics.

Your husband is probably also frightened and confused and he won't feel able to look to you for support. Also, observing my own husband and other men who have been in that situation they seem to go through times of anger and frustration because they can't put things right for you. No matter how caring they are they can't sovle the underlying problem which is what their instinct tell them to do.

i hope that this waiting time is over for you both soon and that the news is positive.

love Angela

[shellbell]

Thank you so much to everyone who took the time to read my question and give such heartfelt and practical advice. I felt much less alone the next day. I really appreciate it. I should have said that I am actually not that young, I'm 40, and just ended up having children quite late. Since I wrote last, there has been some progress. Husband called the gynae secretary in order to bring the appointment forward. He was told that she had very few appointments before the 23rd of December and then she was leaving her position! However, they called us back on the same day to say that gynae consultant wanted to see me next Tuesday the 13th to discuss surgery. Thankfully my CA125 results came back within the normal range which was very good news indeed and husband's mood has definitely improved and he has apologised. He admitted he was incredibly stressed. We are now looking forward to finding out the gynae's opinion on what was found on the MRI. Thinking back to all the symptoms over the past couple of years and how I put up with them because I thought it was a harmless fibroid causing it. If I had known these symptoms were because of an ovary I would never have lived with them for so long. Charlie, you mentioned that you had both, a borderline cyst and fibroids. I wonder what the chances are of that in this case? Is it good news the CA125 is normal even when there is a large mass? Also, I read another question here tonight where a lady made a link between her underactive thyroid and her cyst's growth rate. Her gynae also admitted there was a link. I too am severely underactive due to having a total thyroidectomy exactly one year ago. I had Graves Disease which did not respond to treatment and so surgery was my only option. However, since the operation I am not absorbing thyroxine at all despite being on the highest dose possible. I seen the endocrinologist yesterday, I had full blood tests and am waiting to find out the next plan of action. Because of all this my main worry is that should I have a full hysterectomy, I will have nothing left to produce hormones, neither thyroid nor ovaries. I wonder if anyone else has thought about a link between their cyst/tumour and their thyroid?? I'm so glad there is a place like this where we can benefit from each others experiences. Best wishes Shelley