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Two masses found. Can anyone help with result wait times?

14 replies

OriginalFloorboards · 03/06/2022 10:48

I’m in the process of having two masses diagnosed found via ultrasound after pelvic pain, bleeding etc. My CA125 was raised but I’m aware this could be my endometriosis. I’ve had a womb biopsy on my womb growth and lining and I’m awaiting my MRI ovary scan (delayed as hospital missed it off by accident) under the two week pathway. My Dr has been fabulous, but wondered how long will it be for both results? The extra two week waiting time on the missed MRI has delayed things and I’m over thinking late at night. I have been here before with benign cyst but it went to ultrasound then MDT not MRI. I’m expecting the MRI appointment to be by next week, unless the bank holiday has delayed it further. I’m assuming by then the biopsy will be back so I’ll have at least one ruled out.

I know they took around 22 photos in ultrasound and was hoping it would be clear from that or at least not go to the next level of scan.

OP posts:
WorriedMillie · 04/06/2022 07:08

My mum was recently referred under the 2 week pathway, she saw gynae, had U/S, CT, back to gynae within 2 weeks. We’ve had a slightly delay due to the BH and she’s being taken to the surgical MDT next Friday!

Soontobe60 · 04/06/2022 07:12

I can’t answer your question, but just wanted to say hang in there - waiting for this kind of news is awful and our imaginations can work overtime. Sending big hugs and hoping everything works out well for you x

AGreatUsername · 04/06/2022 09:35

Hi, I’m in a similar place, raised CA125 was found and I was put on the 2ww for an ultrasound where they found 2 masses which looked bad. Following this I was marked for an urgent CT scan which showed there was nothing they could biopsy, however they did an abdominal drain and used the fluid to test.

The CT results were discussed in the MDT and then given to me, it was about a week of waiting, they were pretty sure it was cancer however and booked me in there and then for a debulking surgery. The biopsy took longer, around 2 1/2 weeks. This has confirmed the presence of cancer cells.

My surgery is in 10 days now. Have they said anything to you to indicate what they think? None of them confirmed anything to me but they were very open that it looked very suspicious and they were expecting cancer to be a real possibility, which was AWFUL but looking back did kind of soften the blow when it did come.

sending you my thoughts. The wait is the worst.

OriginalFloorboards · 04/06/2022 10:57

Thank you for replying. I’m so sorry to hear your news. Ten days must seem a lifetime to wait for surgery. I’m glad they are on it though. Fingers crossed they can remove everything and it’s an easy recovery for you. I think that’s the best plan. Get rid of it all.

It’s interesting you should say about what have they said. Like you, nothing confirmed but my Dr has said the more concerning of the two is the ovary. That’s all she said. I’m guessing MRI gives a clearer picture to give a final diagnosis.

I know they have found fibroids in the womb, plus the growth and a thick lining. On the ovary on the left is a large endometriona which they are unconcerned about, but the right ovary has a solid mass with separate compartments and thick walls. That’s about as much as I know. I don’t have any pain on my right side (where they are checking) and I’d never know anything was wrong. So that must be good.

On the left side (endometriona) I have occasional pain, but most of it is in the womb area. I’ve coped with the two weeks, but I think the not knowing and now having to re-wait for the MRI under another two week pathway has extended this to 4 weeks without results is starting to make me snappy at family.

I’m hoping it’s just endometriosis causing the bladder changes. I know it can grow everywhere. I’ve left it 8 months before really seeing anyone. I’m hard and bloated in the stomach but not all the time.

Are you coping OK? This is very worrying time for you and your family. I hope you have support. I’m guessing until they actually get inside they can’t know the full situation. It will be doing nothing for your mental health. Sending you much love. Thank you for taking the time to reply with such open honesty and I am keeping everything crossed the debulking is a complete success xx

OP posts:
OriginalFloorboards · 04/06/2022 10:58

Soontobe60 · 04/06/2022 07:12

I can’t answer your question, but just wanted to say hang in there - waiting for this kind of news is awful and our imaginations can work overtime. Sending big hugs and hoping everything works out well for you x

Thank you very much.

OP posts:
OriginalFloorboards · 04/06/2022 10:59

AGreatUsername · 04/06/2022 09:35

Hi, I’m in a similar place, raised CA125 was found and I was put on the 2ww for an ultrasound where they found 2 masses which looked bad. Following this I was marked for an urgent CT scan which showed there was nothing they could biopsy, however they did an abdominal drain and used the fluid to test.

The CT results were discussed in the MDT and then given to me, it was about a week of waiting, they were pretty sure it was cancer however and booked me in there and then for a debulking surgery. The biopsy took longer, around 2 1/2 weeks. This has confirmed the presence of cancer cells.

My surgery is in 10 days now. Have they said anything to you to indicate what they think? None of them confirmed anything to me but they were very open that it looked very suspicious and they were expecting cancer to be a real possibility, which was AWFUL but looking back did kind of soften the blow when it did come.

sending you my thoughts. The wait is the worst.

Apologies I tried to link to you but failed miserably as I’m useless on this. Your reply is further down if you can find it xx

OP posts:
OriginalFloorboards · 04/06/2022 11:02

WorriedMillie · 04/06/2022 07:08

My mum was recently referred under the 2 week pathway, she saw gynae, had U/S, CT, back to gynae within 2 weeks. We’ve had a slightly delay due to the BH and she’s being taken to the surgical MDT next Friday!

Thank you that’s given me some idea of timescales. I do hope your mum is ok and it’s good you are there for her. It’s still a long process for your mum isn’t it?

I can’t tell my daughter anything as she’s still at school and I don’t want to worry her if everything turns out to be benign.

OP posts:
AGreatUsername · 04/06/2022 13:17

OriginalFloorboards · 04/06/2022 10:57

Thank you for replying. I’m so sorry to hear your news. Ten days must seem a lifetime to wait for surgery. I’m glad they are on it though. Fingers crossed they can remove everything and it’s an easy recovery for you. I think that’s the best plan. Get rid of it all.

It’s interesting you should say about what have they said. Like you, nothing confirmed but my Dr has said the more concerning of the two is the ovary. That’s all she said. I’m guessing MRI gives a clearer picture to give a final diagnosis.

I know they have found fibroids in the womb, plus the growth and a thick lining. On the ovary on the left is a large endometriona which they are unconcerned about, but the right ovary has a solid mass with separate compartments and thick walls. That’s about as much as I know. I don’t have any pain on my right side (where they are checking) and I’d never know anything was wrong. So that must be good.

On the left side (endometriona) I have occasional pain, but most of it is in the womb area. I’ve coped with the two weeks, but I think the not knowing and now having to re-wait for the MRI under another two week pathway has extended this to 4 weeks without results is starting to make me snappy at family.

I’m hoping it’s just endometriosis causing the bladder changes. I know it can grow everywhere. I’ve left it 8 months before really seeing anyone. I’m hard and bloated in the stomach but not all the time.

Are you coping OK? This is very worrying time for you and your family. I hope you have support. I’m guessing until they actually get inside they can’t know the full situation. It will be doing nothing for your mental health. Sending you much love. Thank you for taking the time to reply with such open honesty and I am keeping everything crossed the debulking is a complete success xx

It was a total shock to me as I had only had some bloating and on/off bowel issues (nothing major, just what I thought was a tummy bug that didn’t really clear so I was still getting loose BMs a few times a week), no pain at all, no period issues or bleeding etc so I was just horrified when they said there was a mass, and then another one too. They couldn’t even see my left ovary, the mass has dragged it down behind my uterus, you’d have thought I’d have known something was wrong!

I have a very supportive family, but most of the time my real desire is just to be left alone and to sleep until surgery and it’s over (well, that step anyway!), it makes me snappy too, the constant stress is hideous, so you’re not alone there! Since my drain I have a lot more discomfort, some stabbing pains and wind that weren’t there before. I’m trying to tell myself it’s not related to being eaten alive but it’s not easy to play that silly fear down.

It is so infuriating that they’ve missed off the MRI for you. I wasn’t offered one of those, only the scan and CT. I hope it gives you the answer you need. Feel free to PM if you ever want a rant or chat (if I can work PM here, I only really joined for this!)

OriginalFloorboards · 04/06/2022 16:14

Well I can imagine that was a shock especially given no other issues. It’s a good job you were on the ball and got it checked. Hopefully it’s something they can put right when they debulk you (what a word!) and get the lot out. The sooner the better and no doubt you are counting down the days to the op (although not in an excited way, there is bound to be trepidation and worry).

Glad you a supportive family. You are bound to be tired - both physically and mentally with everything that’s going on. Do what you need to do and let everyone else pick up the reins during this time. It’s really all about you taking extra care of yourself right now.

Your fear is completely normal. No doubt it’s ten times worse in the early hours. That’s when we overthink and stuff goes round and round. If you’re feeling snappy that’s also very understandable.

Gosh, yes fancy it doing that to your ovary. It’s crazy to think it didn’t give you pain. Maybe they are flexible. I don’t have any pain on my right whatsoever. Was very surprised at the result but not with the womb. That’s where I feel the pain is but if it’s got fibroids in it that would give off pelvic pain.

With yourself just having bowel / stomach upset and nothing else you would kind of ‘expect’ IBS. No wonder everything is a shock!

I’ve got endometriosis so I’ve put everything down to that. I’ve been trying to ride it out until menopause so I’ve had pain for a while and endo flare ups. This pain has been different. Can’t explain it. Plus the needing a wee has got ridiculous. It’s become a party trick. I can do it on demand!

I expected for the endo to have grown on my bladder. I wasn’t expecting them to have found so much stuff. I’ve had bladder scans first. All clear. Glad I went back with the pelvic pain now though.

I can usually tell when I’ve got cysts. I’ve had about 5 official ones and one that was a worry but was ok in the end. I guess this mass isn’t coming up clear on ultrasound. The symptoms could relate to literally anything they have found. It seems endo, fibroids and endometrionas all give off the same things!

As for being snappy, I am just annoyed with the pain interfering with my plans. Then having to ask my family to do things which isn’t done to how I like it or want it. I’m definitely menopausal though so exploding more where I might have had more tolerance. I have horses at home so they require a lot of physical work.

Do try a PM. I’ve not done one before. I’m happy to chat if we can figure it out! Take care. Eat cake. You deserve it!

OP posts:
WorriedMillie · 04/06/2022 21:46

For those of you whose minds may be racing towards a cancer diagnosis and who are facing the horrible uncertainty, the Macmillan support line is fab, even if the outcome isn’t cancer, they are still there for you in there “here and now”, to help with the uncertainty
They also have some resources to help
with talking to children and teens and appropriate language to use at different ages
Sending love to you all ❤️

OriginalFloorboards · 05/06/2022 08:19

Thanks WorriedMillie. That’s a good post to those on this thread or who are maybe reading it with their worries / situation.

OP posts:
RedorangeyellowBLACK · 05/06/2022 13:16

A couple of years ago my sister had very similar to you. She had a raised ca-125 then a mass was detected on one of her ovaries via a scan, they warned her it was probably OC and she then had to have an urgent 4 hour op.
Turned out to be endometriosis.
The wait is beyond anxiety inducing, I feel your pain.
A few years ago, something was found on one of my kidneys after an ultrasound. I got a phone call the next day saying I had to have an urgent CT scan that day. No one could tell me anything other than the consultant requesting the ct scan was a renal oncologist, I was beside myself.
No one would tell me anything, the secretary, my gp, no one. It was a very long 3 week wait until they called to say it was a large cyst.
Hope you hear soon op, good luck.

OriginalFloorboards · 06/06/2022 14:06

RedorangeyellowBLACK · 05/06/2022 13:16

A couple of years ago my sister had very similar to you. She had a raised ca-125 then a mass was detected on one of her ovaries via a scan, they warned her it was probably OC and she then had to have an urgent 4 hour op.
Turned out to be endometriosis.
The wait is beyond anxiety inducing, I feel your pain.
A few years ago, something was found on one of my kidneys after an ultrasound. I got a phone call the next day saying I had to have an urgent CT scan that day. No one could tell me anything other than the consultant requesting the ct scan was a renal oncologist, I was beside myself.
No one would tell me anything, the secretary, my gp, no one. It was a very long 3 week wait until they called to say it was a large cyst.
Hope you hear soon op, good luck.

Wow. I’m super pleased it was just endometriosis. I say ‘just’ but as a fellow sufferer it is anything but ‘just’. I’m hoping it’s a good sign that it is an MRI and not CT which most people have following a mass found. Although not 100% sure if that makes a difference.

You must have been worried with the phone call and the appointment. I’m glad it wasn’t anything like what they thought. That was good news.

The MRI is booked in now so hopefully I’ll get all results soon. I definitely need the source removing and endo operation as it’s now become really bad pain on a daily basis. Thank you for replying and I hope your sister is managing ok.

OP posts:
RedorangeyellowBLACK · 06/06/2022 14:57

Yes, my dsis had to have a ct scan when they suspected it was OC so hopefully a MRI is a good sign. I’ve read endo scar tissue etc is easier to pick up on MRI rather than CT. I am currently looking into the possibility of having endo myself following years of issues, I agree with you, from what my sister has gone through, it’s not a pleasant condition.
I hope all goes well x

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