I got my results recently of MRI repeated in October last one was March. The mass has only increased marginally in size. I have repeated CEA and CA125 so should get those results tomorrow. Last time they said it was solid but this time they said it is not solid component. I don't know what tubular means I am thinking it's in fallopian tubes - does that make it worse.
Got letter from other hospital on March scan which said 'our impression from reviewing the images with our consultant radiologist is it is possible that this is tubular in nature, but it is of course hard to be definitive and it may or may not involve the ovary. Certainly it seems reasonable given both the symptomatic component and the age of the patient to proceed with salpingo oophorectomy. Of course it is up to the clinical judgement of the surgeon at the time of surgery whether salpingectomy alone can be performed but this may or may not be possible. Conservation of ovary would seem reasonable although the patient will have to be counselled that this may result in a second surgery if the pathology from the unilateral new salpingo oophorectomy is sinister in nature'.
They have not seen the new MRI yet which was done in October they are going on the March MRI. To be honest they did not seem interested in redoing the mri in either hospital so I took it on myself based on all your advice here by kind people and given that I have had horrendous endometriosis since 14 only diagnosed in 2015 and I am 52! .
Now I have a) one consultant who wanted to remove both ovaries and fallopian tubes and the mass saying possibly malignant could be benign. The second concologist saying salpingo oophorectomy but that depends as above and the other one before that full hysterectomy! Does anyone really know. They clearly don't seem interested in watchful waiting either.
I am sending back the new results to each oncology/gynae again which state:
"5.2 x 5.8 x 7.4 cm complex cystic lesion again at right adnexal level which possibly contains a tubular component anteriorly. This appears to marginally increase in size from prior study of march 2023 but it is otherwise unchanged. Specifically no solid component or other concerning features. 1.8cm simple appearing follicular cyst seen within the left ovary. Normal appearing retroverted uterus. No adenexal or pelvic mass seen otherwise. No free fluid or other pelvic abnormality seen".
I do have dull ache pelvis all the time sometimes pain into the lower back worse lying down at night can't get comfortable. My periods have stopped since August. Hope they stay away as so painful for years and had become heavier. I have back issues anyway from hoisting lifting for years (caring for Parkinson's) where now facet joints hurt and degenerative changes.
Any advice welcome. Just waiting for CA125 blood results and CEA tomorrow. Also waiting for apt proper endometriosis centre as I really don't have confidence in all I am being told..Can this not be taken out/burst without going near fallopian tubes/ovaries?
Sorry for long drawn out writing.. This is growing but very slowly so as it is not solid could it go away? I am caring for my mum and I really don't want to end up worse such is my faith in the medical profession after years of being fobbed off. The endometriosis never gets mentioned even now it's just ridiculous. I am waiting for an endometriosis apt/oncology somewhere else because I don't feel trust in who I have...it feels like they are all guessing but maybe that is the nature of this conundrum who knows...
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Hi. If I were you I would have the tubes removed for prevention and possibly the ovaries, depending how you feel about inducing menopause. High grade OC is thought to start in the tubes. Endometriosis can be associated with a different form of OC, possibly low grade. At any rate removing the tubes is not major surgery and they could run a he pathology and make sure nothing incipient is happening there. To me it would be worth while insurance.
I don't want to do surgery if I could avoid it as I have read so much on ovary removal increasing the risk of dementia in patients who have these pathologies in the family. I am terrified of the medical profession based on my experience with my father. I didn't know that high grade oc starts in tubes 😱but they are not even sure if ovary is involved. It's all so vague. I was told ovary in March now different opinion saying tubular....this is a big difference
Hi. I understand your fear of surgery but just removing the fallopian tubes would be helpful and not have the impact on hormones that removing the ovary would. When we talk about ovarian cancer it includes fallopian tube cancer and primary peritoneal cancer. They are all treated the same. Many of us on this site will have been through great difficulty getting doctors to pay attention to our symptoms and doing the necessary tests and then being diagnosed at stage 3 or 4. Also scans can't always show whether something is on the ovary or the tube. I'm not trying to scare you or be pushy and I apologize if I'm coming across that way. As the woman I do volunteer work on ovarian cancer says, get your doctor to rule out ovarian cancer before assuming it's one of the more benign things. Again I'm sorry for rattling on, I just don't want anyone to experience what I did, getting diagnosed two years later than I needed to. Take care!
I feel I don't have the right consultant yet. Different opinions. The letter said that they didn't know if just fallopian tubes or it involved right ovary. Other guy wanted to remove all but I don't feel I trust him doesn't answer questions just so vague. I don't think they can rule out until it is removed? I have knawing pelvic pain all the time and bloating when I eat. Probably worse at night wakes me but I don't have a good back anyway. Is there no possibility it could resolve itself when it has only marginally grown? I am terrified anyway and don't want to be left worse off.
they can't rule out ovarian cancer because there is no test until they biopsy it when they take it out? I asked about the RMI and IOTA or what were they using to categorise it but I feel the consultant didn't go into that at all and I am a detail person.
Hello there - you certainly have a lot going on and caring for your mum also. Its understandable that you are experiencing a lot of worry and fear. I didn't ask about seeing any of my scan reports but in my case it was a bit more straightforward as they could see that it was highly likely to be cancerous from the scan but they couldn't see where it was coming from. I was told that they could not be 100% sure it was cancerous until it is out and biopsied. I was also told they would remove anything that looked like it might be cancerous (once in there). I think Delia makes a really good point as well about ruling cancer out rather than in. It must be confusing that you've had differing advice - especially when you would prefer not to go down the surgical route if at all possible. I recall my case going to a multi disciplinary meeting - where a group of professionals discussed the scan and provided guidance about what should ideally happen next,. It seems as though you've had several different opinions? I hope you get enough answers on here to help inform your decision. But it is scary and I don't think that fear helps when trying to make informed decisions.
Hi Jennifer, it really is scary. Was it cancer when they took it out for you? I have had 3 opinions and different! I am going for an appointment to an Endometriosis clinic on 30th of November and I have been told the Oncologist/Surgeon is lovely and he will answer my questions. No one has even considered that I had endometriosis for 44 years and if this could resolve spontaneously. My CA125 is back today and it is lower than the last time 8.7. I have no back up plan for my mum either. No one has ruled out or in and I don't know why they can't based on Risk of Malignancy Index and IOTA or whatever they use. Both multi disciplinary teams gave different opinions. Really hoping the 30th gives me the answers because the other 3 haven't.
Hi, Is your surgeon a Gyno/Oncologist? It is scary but they are top notch in this field if yours is not I would definitely seek one out. I was diagnosed with Stage 3 due to silent endometriosis only symptom I had was constipation if diagnosed in earlier stages it has a higher cure rate. As other survivors have responded OC has symptoms that mimic other conditions push thru the fear time is of the essence. Hugs from Chicago
He was gynae oncologist and the other one was oncologist. Don't feel they were top notch which is why I have another appointment on 30th of November with someone who is more gynae/oncology endometriosis and the varying opinions is worrying. Very different. I have bloating/pelvic pain which seems to have got bad this week but as I mentioned I do have back issues and years ago was told I had IBS. But the dragging pelvic pain is probably the worst and when stomach bloats a lot. I'm weary. The endometriosis was so bad for years undiagnosed until only recently. How are you now? The fear is who is going to mind my mum I have no plans in place she is 87 soon. Hugs from Ireland xx
I’m glad you’re getting another opinion I hope this Doctor is a good fit and you get some answers. As I took care of my Elderly Mom I can so relate to what you’re going thru. I’m doing well please keep me posted.
So glad to here you are doing well xxx. I really pray he is better than the rest I feel I just wasted a whole heap of time with the others. It has not been nice going to the others...just so vague. I am a thorough person so I don't understand it. I just don't have a back up plan for my mum either if anything happens to me. I will keep you posted.
Hi, I have had a lot of scans, mostly Ct & a couple of Mri scans since been diagnosed in 2019. I have never been given or have been asked did I want a copy of the results, but I am actually ok with that, because I am lucky enough to have a brilliant Gynaecologist & Oncologist who explain to me in plain english what the Ct scan shows or doesn't show. I know if they are worried about anything they will come straight out & say it & I have great faith in them which is the way it should be for everyone . I think there is a lot of information in the MRI scan results you have been given, that unless you have a medical background ( I hope your not offended by me saying this) you couldn't be expected to understand so of course you are feeling confused & worried. Is there a specialist nurse with either the Oncologist /Gynaecologist that you could talk to, that could explain these results to you. Have you been offered a Pet scan which is more detailed? Have you had an internal examination by a Gynaecologist? Has your Gynaecologist not suggested doing a laparoscopy ( keyhole surgery) which would be less invasive than a full operation. They could have a look in, possibly take a biopsy sample & get a better idea of whats going on, whether there is something sinister or is it just a benign cyst , which is hopefully the case for you. Your recovery would be much quicker after it, rather than having a big operation straight away & then maybe finding out it wasn't necessary. Sorry for firing questions at you, but you have a lot of unanswered questions going around in your head & no one seems to be able to give you any direction to what happens next. Hopefully you will find someone soon who will & then you will know what your dealing with. Please let us know how you get on & hopefully all will be ok & then you can continue caring for your mum. X
I wouldn't have asked for all the scans only I didn't feel trust with any of the consultations to be honest. I am really not there finding a person who I feel comfortable with which is why I had to proceed to yet another opinion that apt is 30th of Nov and I am really hoping that will help. I have been told he is a great man! Unfortunately my gut is usually very good on people and now that I am 52 I tend to listen to it I didn't always. When I gave the specialist nurse the questions she said I don't think it's fair I should be answering those and I said but I wasn't asking you to answer them I was asking the MDT or the surgeon and she came back and said he was a bit overwhelmed by all my questions. I said if he is overwhelmed by my questions should he be doing surgery. She got on a high horse with me. I told my own doctor who laughed and said forget about him we will refer elsewhere and they should not be upsetting me but supporting me given the worry..
No one mentioned a Pet scan. What does that do? The gynae oncologist suggested laparascopy to remove both ovaries and fallopian tubes and the mass but said then they would biopsy to know but no other way. Said no biopsy could be done to know as no test for ovarian cancer. The second consultant oncologist only said mass could be tubular but couldn't tell if ovary impacted and suggested removal fallopian tubes and saving ovary if that was possible. You are right feel I have no direction. CA125 is normal as is CEA but I know that is not foolproof. I am now nearly a year at this first MRI was Feb. At least it has only marginally increased recent MRI Feb ultrasound and March. Is MRI not the best way to check or do I need to repeat TV ultrasound? No idea about Pet scan wasn't offered. Looking it up now.
Hi, I had a Pet scan done after my surgery for recurrence in Dec 2020. I think its a more detailed scan where they can check to see if there is any tumours on any of your organs. For me it hightlighted a few lymph nodes in my abdomen but so far all the treatment I have been on since that scan have kept them stable. I meant to ask you what part of Ireland are you living in? It doesn't sound like your nurse specialist is very helpful in finding out whats going on. She is supposed to be your go between for your oncologist or Gynaecologist. I am not sure where you go from here but all I can say is keep fighting to get answers, its your life after all. I hope you get sorted soon X
In the country so go to Dublin for consult. Gynae oncology nurse seemed really immature and seemed so stressed out herself. Just waiting now for a new gynae oncologist on the 30th of November. It has got to be a bit better than what I have endured for the last year. Thanks so much for your help and kind words. xx
I attend a Dublin hospital. The Mater & St. Vincent's hospital have an excellent Gynaecological team. Your Gp can make a referral to one of their Rapid Access clinics for you. I was seen by a Gynaecologist within 2 days. I am a public patient & have been lucky enough to have been given the best of care. If you have no luck with this new Gynaecologist I would highly recommend those two hospitals mentioned above. Good luck going forward X
pet scan for sure and if I knew then what I knew years ago I would have removed everything my life has been cut short and been so painful with chemo the past 4 years
I would not wish this on anyone but hey in the end your choice
They probably will do the surgery by small robotic incision
Oh no I am sorry you are going through all of this. What is happening now for you? Just read your history. Will say to them on 30th about petscan I am really hoping they are better consultant because what I have had at moment isn't great and now 9 months trying to get direct opinion which from what I can see isn't likely possible without removal.
nothing more they can do we will try Elahere and avastin but you need a folate receptor of at least 75 % for it to work can’t go in any trials as I get drained of ascites every two weeks which disqualifies me. They are trying everything and hoping something will stick but it seems I have the perfect cancer for killing you
Our 4th anniversary here in Kauai Hawaii yesterday!
How are you doing? Said prayer for you that something changes. xx Going to endo centre tomorrow and hopefully will find someone that is not 'overwhelmed by my questions'... The words the gynae oncology nurse used... which I found amusing...
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