Newbie mucinous carcinoma anybody else with this please ?

[Stephywephywoo]

Hi everyone I am newly diagnosed

Last year I noticed that I kept needing to go to the toilet more often and I was experiencing sharp pains around my left over if I went to the GP quite a few times and I was told things like cut down on my green tea that I was drinking or maybe I have a urine infection excetera I asked to be examined which I was and the symptoms still persisted so I asked if I could be sent for a scan. Time passed and I still have not received a date so I went back to the GP to trace this up and I was referred for a scan which I went for in December I was contacted by the GP and told to go for blood tests immediately, I literally left the scan clinic and went to have my bloods done which came back with no raised levels of tumour markers and I have had bloods done since even knowing that I have cancer and have still come back with low tumour markers. I was referred to the hospital under the two week cancer screening. When I went to the hospital they told me I had a 6 cm cyst on my left ovary and put some other details in the computer and told me that I am not old enough to have ovarian cancer so this must be a dermoid cyst I could go on a waiting list for surgery to remove it if it was really causing me that many symptoms however I was told it is quite a small cyst so it shouldn't cause me that many symptoms but it really was. Over Christmas 2018 I was in absolute organ in my stomach ballooned I was in so much pain I didn't want to meet I didn't want to do anything I presented myself at the hospital in January and had another scan they wanted to take the cyst out as an emergency to relieve me of pain but I had had previous heart surgery so they were a bit apprehensive about doing the surgery until they had some more information on me another date was made for February 2019 to remove the cyst however the relevant information from my cardiologist had not been received so the surgery was postponed until the 12th of April 2019.

I went for laparoscopic surgery to remove the 6cm cyst from my left ovary that was causing me pain and other uncomfortable symptoms.

During the surgery my surgeon found another cyst on the right side which was a little bit bigger at 8 cm but was never shown on any scans.

I was recovering well from the surgery and I was starting to get about a bit more when I received a call from my gynecologist secretary saying I needed to go to the hospital the next day which I did and they told me that I had cancer in both of my ovaries. I wasn't too clued up on the situation so I asked the question is it gone now because you have removed the cysts and the doctor said no because the cancer is in both of your ovaries. A few days later I had a CT scan which confirm no evidence of distant disease and I asked the nurse if I could have the details of what they found on the biopsy she said all they could tell me is it was a grade 2 mucinous carcinoma.

I have now been referred on to the main Hospital with an Outlook to having a hysterectomy followed by chemotherapy I'm just wondering if anybody else has had a similar experience because I asked for a stage and they said they couldn't tell me a stage and when I have spoken and another support group I have been told that it is very strange that my cysts were roughly the same size and that the cancer was in both of my ovaries I feel like I've been given the diagnosis and I'm just left stewing over it and spending countless hours Googling trying to understand what is going on.

I'm sorry if this is quite a long post but I felt like I needed to explain the story Fully , and I would like to thank you for taking the time to read this.

Best wishes to you all 🤗

[Hidden]

Hello and welcome to the club that no one wants to join, but the one to which we are all grateful to have joined. These are difficult days - the early ones - as you have more questions than answers and as the medical community postpones giving you full information as they work to figure out exactly what is going on.

The doctors cannot fully stage your cancer until he/she does the hysterectomy and looks around (sounds gross, but that's what they do) for any signs of spread. They will remove anything resembling cancer during the process and send it off to pathology for more data. After your surgery, they will be able to accurately provide you with a Stage and more clarification. Chemo is "standard" for most female gynecological cancers beyond Stage 1 and/or some Stage 2's.

Google will provide you with an overview of what is possible, but please don't spend too much time there (easier said...we ALL do it as we try to figure out what is happening, what is next and what lies in the future). Unless you have access to medical information in it's original form and/or have a student ID login for a university library, much of what you see is going to be genericized and/or shared by companies who profit from treatment.

Waiting patiently for surgery and the results can be difficult. Try not to get ahead of things, imagining the worst. For now, try to take good care of yourself and if you are still anxious - read through some of what has been written on this site.

You are not alone and the ladies here will help you through this by sharing their experience, their knowledge, their "tips and tricks" for navigating through it all and also their stories of faith, hope, success (and yes, loss). You will gain insight and strength here and we will always listen compassionately, empathetically and lovingly.

Keep us posted about your journey. We've got your back.

[Stephywephywoo in reply to Hidden]

Oh thankyou for your lovely reply I'm seeing my oncologyst on Friday for the first time I will refrain from Google for now 🤣

Best wishes to you and thankyou again so very much 🤗

[Solange in reply to Stephywephywoo]

What a worrying time you're having, you poor thing. So many of us can identify with what you're going through and sympathise. I just want to to wish you good luck for Friday. Write a list of anything you want to ask and don't be afraid to sit and openly refer to it. I used to write my questions down but be too embarrassed to get the list out while with the Oncologist - so never asked everything I intended because I was too nervous to remember them. I later realised it was considered normal to have a list. Also, my hospital appointment letters alway suggest you bring someone with you to your appointment. That way they may remember things you forget. I'm lucky - my lovely supportive husband has been with me for every appointment. It's surprising what he remembers being said that I don't - and vice versa.

Sending a big hug, Solange 😊 Xx

[Stephywephywoo in reply to Solange]

Thank you so much for your reply I just want to find somebody who has been in a similar situation and I'm and quite a few support groups and nobody has come forward with a similar story I think it is strange that all my blood tests came back normal and scans said that nothing was wrong as well I just hope that the surgeon has not done too much Bad by chopping the cyst up inside me A1 lady reply to me saying that because it's mucus carcinoma that it's probably spreading all over my body now in the form of mucous and I'm like 😣😣😣😣😣😣 so I do have a bit of a mucus cough at the minute so I'm straight away thinking she is right.

If it was a straightforward diagnosis this that and this fair enough but I just feel like I've been dumped with this diagnosis and been told that the cyst were chopped up inside me and that's it.

I appreciate your kind words I'm glad that I have found you 🥰

[Trathi]

Morning Steph, I am sorry you find yourself in this situation, getting that initial diagnosis is horrible and sometimes the doctors etc are so blasé about it.

I just wanted to let you know this group is fantastic and the support is amazing. There is always someone who has had something the same or similar, and it reassures you not only you are not alone but of the hope that your path follows theirs with the length of time they have been battling this dreadful disease.

Sending you lots of love 💕 hugs 🤗 and warmest wishes

Tracy xxx

[Stephywephywoo in reply to Trathi]

Thank you so much for your reply I just want to find somebody who has been in a similar situation and I'm and quite a few support groups and nobody has come forward with a similar story I think it is strange that all my blood tests came back normal and scans said that nothing was wrong as well I just hope that the surgeon has not done too much Bad by chopping the cyst up inside me A1 lady reply to me saying that because it's mucus carcinoma that it's probably spreading all over my body now in the form of mucous and I'm like 😣😣😣😣😣😣 so I do have a bit of a mucus cough at the minute so I'm straight away thinking she is right.

If it was a straightforward diagnosis this that and this fair enough but I just feel like I've been dumped with this diagnosis and been told that the cyst were chopped up inside me and that's it.

I appreciate your kind words I'm glad that I have found you 🥰

[Decca4Ever]

I think it's v good that you will now be treated by the main hospital. It doesn't sound as if your local one has a gynaeoncologist. The usual blood test - Ca125 - isn't v reliable for mucinous cancer. Ca 19 is meant to be better. But your local hospital may not have known that. Mine didn't. It's also, sadly, possible for young women to have ov ca, as you know.

The second good thing is that a CT scan shows no sign of spread, so it's not at all true that the cancer is spreading all over your body as mucous. I don't think it's that odd to have tumours in both ovaries. My consultant - at one of London's top teaching hospitals - told me that what happened to one ovary very often happened to the other. You can still be stage 1, with both ovaries involved.

I had a mucinous Borderline tumour, not cancer, so I've no direct experience, and I am not a medic, but read up about mucinous ov ca, just in case.

I do hope you get better treatment at your new hospital. You've had a v rocky road up to now. When it comes to chemo, some experts think that the sort used for bowel cancer has better results on mucinous tumours. Don't be afraid to ask for a second opinion at a major cancer centre if your hospital doesn't have much experience with mucinous ov ca. They don't see as many cases as with serous.

Best wishes for your appointment. Things should move v quickly now.

Sue

[Stephywephywoo]

Hi sorry I've been quiet thankyou for your reply I've been in hospital for my big OP.....

The Macmillan nurse came and read a letter to me that I never saw suggesting my stage even prior to surgery ( this was from initial surgery ) I was like wow !!!!

[Petrolhead]

Hi Steph

Glad the op went well. Strange about the stage info before the op. I would very strongly suggest that you request a copy of that letter and all other paperwork so you can digest the information. When do you get to hear or know the histology report. This is most important to understand what has gone on. Again insist on a copy.

Keep us informed. It maybe better to start a new thread on this so more people can see it. Some people do not look at older posts that have been recently active so may not realise you have posted on this thread again.

Best wishes

Fay

[Stephywephywoo in reply to Petrolhead]

Hi well its been a whirlwind I'm confirmed at stage 2 now.

Everything was clear as I said except slight parametrium involvement so that upstaged me

One tumour was grade 1

Other was grade 2

I have asked about invasive or expansile I've had 2 replies

1. It's not documented so we assume invasive .

2. It's not documented so we don't know for sure there was nothing to test.

Ok 🤦‍♀️ I've started chemo carbo taxol and that's that 🥴

[Petrolhead in reply to Stephywephywoo]

Hi Steph

Thanks for the update. Just a suggestion- when I obtained a copy of the histology report it stated expansile. Have you managed to get a copy (I had to be persistent!)

Still good luck with the chemo 🤞hope you do not have too many horrid side effects.

Best wishes

Fay

[Stephywephywoo in reply to Petrolhead]

I had a letter sent to my address which was a forwarding of the letter referring me to make hospital which said infiltrative but when I have asked about this at the second hospital they said it's not specified on the pathology report when I am asking for the pathology report as you say it seems quite difficult to get this and they are wondering why I want it and what would I do with it and I noticed that the second hospital that I went to didn't have a copy of the pathology report something is not quite right 🤔

[Petrolhead in reply to Stephywephywoo]

Definitely more investigation needed me thinks. As to why you want a copy- why not and you read so many cases of where notes are lost especially if you move area. I will await the next instalment! 🤞

Best of luck

Fay

[Petrolhead in reply to Stephywephywoo]

Also I have just thought. Where I live (Dudley area) has an Access Records department. I contact them for any scan results or blood results. As I also have an NHS email address they will send by email, otherwise they send by post (small charge).

Another thought is to ask your GP. They are bound to have had a copy for your records.

Best wishes

Fay

[Stephywephywoo in reply to Petrolhead]

I just rang the GP and they have printed everything off from April and may which is when I got diagnosed that was quick quick wasn't it 🤣

[Petrolhead in reply to Stephywephywoo]

Excellent result. Well done 😁

Fay

[Stephywephywoo]

Hello I'm back so I went for my results everything came back clear except a nodule on my parametrium 🤯

They want me to go for an endoscopy so I'm freaking out at that now .

I asked in the meeting what stage I am and they said we cant say until after further tests have been completed.

They said the histology doesnt match that of ovarian type 🤢

So now I'm on pins .

🤗🤗🤗 thankyou for your reply

[JanTheHesitator in reply to Stephywephywoo]

Hi Stephy,

Any news? I've recently been diagnosed with stage 1, grade 2 mucinous OC (age 39) so we might be in the same boat. I won't know any more for sure until after my own big op on August 24th. I've already had a 12cm mass and R ovary/fallopian removed. This will take out appendix, omentum and a hysterectomy. Only then will they know the true state of affairs I think.

I know with mucinous there's often the complication of figuring out where it truly started, e.g. in the bowel, appendix or ovary!

Hope you get some clarity soon

Xx

[Stephywephywoo in reply to JanTheHesitator]

Hello I had the gastroscopy and it was clear.

So did you have your cyst removed now your waiting for big OP is that right ? 💞🌻💞

[Petrolhead in reply to Stephywephywoo]

Hi Steph WW

That is why I needed to see my histology report. Sometimes there is difficulty in distinguishing between bowel and mucinous ovarian. Often they do a colonoscopy to be sure. For me it was mucinous oc due to several other factors.

Best of luck

Fay

[Stephywephywoo in reply to Petrolhead]

Hi what are the factors please maybe I can rv my pathology too ?

Your very helpful I appreciate your replies.

Best wishes