Handhold if anyone’s around? Scan yesterday at 5pm, GP called this morning

[GiveOverWillYou]

Wondering if anyone has any experience/insights?
Late 40s, on HRT. Cycle usually still rock solid, horrendously heavy, except for last few (2-3) months - spotting, random bleeds, periods when not due. Bit of pelvic discomfort.
Went to GP, but kind of hoped assumed it was the beginning of the end of periods and just the timing going haywire/and to find out how I should be taking progesterone as had previously been on that Day 15-28 and cycle being out of whack meant that that regime was going to be hard to do. GP said she could feel something on the left hand side. Recent CA125 was fine, recent smear was clear ‘but cervix is very red’. My cervix has always defied medical science (that’s another story) so wasn’t unduly worried. They upped progesterone to 200mg daily, put me on the 2 week wait for internal/external US. It’s been 5 weeks 😬but I had the US last night after 5 o’clock. Sonographer was rummaging around for ages (over 30 mins) and made a point of saying the GP will be in touch, but if they aren’t, you must contact them. I know they usually can’t/don’t say much. Told myself that it was good that the tests have been done and that I’d hear in due course, not to worry in the meantime. Then this morning I have had 3 calls from the GP before 10am, which I missed as was in a work meeting with phone off. I called them back and they asked me to come in at noon. So now of course I am absolutely shitting myself, and have self-diagnosed with every gynae cancer going.
Don’t know what I’m asking for really, other than a handhold, and if anyone has had similar happen and it turned out to be something that wasn’t nefarious. I feel lucky that at least I find out what’s going on this morning but the speed at which they’ve followed up is terrifying me 😧Speculation of course, but I can’t help but feel that if this was, I dunno, fibroids, there wouldn’t be this level of urgency this morning

Hi @GiveOverWillYou
I’m glad you’re in the system; albeit with technical glitches!!!
I know it’s frustrating but a doctor won’t tell you what it is until they have confirmation from a biopsy. The MRI will show any evidence of said mass spreading.

I’ve been in this situation twice and actually both times have been told it’s cancer or very probable cancer. Both times it wasn’t! So I know the lack of being given possible diagnosis and the waiting is awful, but I can also say being told it probably was and sitting with that whilst waiting for mri results was hell too and left me confused rather than relished it wasn’t. So, for what it’s worth I think it’s better they are cautious about saying what it might be.

You will continue to be in my thoughts. Keep up with the wine, baths, lovely lunches and dancing!!

Thank you for updating, sorry that it wasn't the easiest of experiences. So poor that they didn't have the reports etc. My latest cancer diagnosis they didn't have my notes from the previous hospital. However they definitely had all the various scan reports so could at least make a partial diagnosis.

However please stop googling. Like you I am better armed with facts but it is so easy to come across something terrifying and not relevant to what's going on.

Sending hugs OP xx

How frustrating. I know it’s great you are in the system and the process has started etc but they really don’t make it easy do they?

Thinking of you and hoping it will be something easily resolved.

What a farce of an appointment! At least you’ve had a biopsy now though. Thinking of you

Gosh @GiveOverWillYou what a crappy appointment. That’s really not good enough. I once had an NHS follow up appointment and they’d lost my notes. I complained to PALS.

Whilst I was waiting to find out what I was facing, I did the same as you. I know everyone says not to but I couldn’t stop myself. It definitely didn’t make things worse.

I had the uterus sample taken for biopsy but they didn’t touch the mass. I think they generally don’t take a sample from that in case it is cancer and they don’t want to disturb it.

Despite my tumour being ovarian cancer, my CA125 was always normal. Instead, I have tests for Inhibin A and B.

Your MRI should show more clearly what you’re looking at. I’m hoping for you that it’s benign.

Sending love and strength. ❤️💪

A huge, badly deteriorating fibroid — though presenting in a very unusual way — absolutely could be what’s going on. That’s exactly what happened to me five years ago. Have you asked for a hysteroscopy yet?
I went through the same nightmare: frightening terminology being thrown around (including “uterine sarcoma”), and doctors who were hesitant to examine or treat me because the fibroid wasn’t behaving or appearing in the typical way. I became extremely unwell, ended up being admitted as an emergency, and the consultant tried on take that day tried to refer me to the nearest cancer hospital — but they wouldn’t see me without an actual confirmed cancer diagnosis.
Eventually, a very brave consultant agreed to take me to theatre. I had an emergency hysterectomy followed by an agonizing wait for results. Even then it took so much longer and the histopathologist requested a second opinion as the fibroid was so huge, so septic and degraded it was hard to tell if there was or wasn’t cancer in it. Eventually the all clear came.
Please look after yourself, OP. Do you have anyone with medical experience who can help you navigate the system? I’m a nurse with 30 years’ experience, and even I felt completely lost and alone going through it all.

OP I sent you a PM last week about my experience with what was seen to be a tubo ovarian mass (didn’t want to put too much on here). Maybe take a look if you can x

Sorry the appointment was so crap. You might like to join one of the cancer forums online, maybe McMillan. There will be people going through the same process and possibly having issues while they do so. It is not only people with cancer who use them, it's anyone on the pathway.

Personally i would google if you are the sort of person who can see something like "around 8.8% of patients in a recent study on this pathway were diagnosed with cancer" and not immediately become convinced you are one of the 8.8. Remember that if you turn out to be one of the 8.8 quite a lot of them can be removed. Figures for gynae referrals may well be better odds as they tend to be picked up early and to be more removeable.

Thinking of you after that overwhelming and frustrating experience.

Thanks all x

I forgot the bit where there was a stand-off with the consultant about which side the bloody thing is on - the sonographer wrote right hand side on her report (I assumed that was some kind of standard NHS protocol, ie using the clinicians’ perspective of right/left) despite all the poking around being on the left, so the consultant needed convincing that it was actually on (my) left - which a quick press of the belly and accompanying yelp confirmed, but not before we’d argued the toss for a couple of minutes!

I suppose this is why they draw on limbs with marker pens for amputations 😳🤣

Google/ChatGpt is a blessing and curse for this kind of thing really, isn’t it - Having scared the living daylights out of myself on Friday, I am less scared it’s something awful now that I’ve scoured info on possibilities/likelihoods and learnt more about what is could be, and the likelihood of it being dreadful, and of course, I’ve taken comfort from all of you who have been through similar and shared your stories and are now well/swinging from the chandeliers! So I’ll try and stay away from that stuff for now until I have new info to work with as otherwise I’ll be going round and round in uninformed circles

@Bibanova I have someone in mind to be my clinical buddy/chaperone/help on the clinical side. She is brilliant in these situations (biochemist background, takes no shit, cuts to the chase in a very helpful way so gets doctors working with her quickly) but I can’t go to her with any of this just yet as she’s facing a Cancerversary this week that’s likely to be very painful for her so I don’t want to make that any worse)

@treesocks23 I’m so sorry I missed your message, have PMd you x thank you

@GiveOverWillYou whatever the outcome you have the collective power of Mumsnet sending you good wishes, prayers and love. I'm sorry it's been such a nightmare for you.

I am sorry it was such a muddled experience. But very glad you have someone lined up for role of clinical buddy/ chaperone. That is so important to help navigate the system and to help remember who said what and when!

NHS sounds so scary at times!
I have another ‘it looked bleak but actually was ok stories’ if you don’t mind OP.
Daughter (30) had all the worrying symptoms, at first GP suggested IBS and said come back in 6months but she pushed for a referral to gynae and a scan. The scan showed a grapefruit size mass on her ovary (these things always seem to described as grapefruits!!). They quickly removed it in one piece (to avoid rupturing it) so she has a sizeable scar. When tested it was non cancerous and so she needed no follow up. A very worrying time which turned out ok.
Everything crossed for you OP and thanks for keeping us updated.

Re: Wondering why they’ve taken a random endometrial biopsy and not one from the mass

When DH had suspected lung cancer a couple of years ago we were told that they wouldn't take a biopsy directly from the mass as that might disturb cancerous cells which could end up elsewhere and spread the cancer.

His 'tumour' turned out to be an abscess and he is now fine. I hope you get equally good news.

I had this, too, in 2022. I had a history of 3 large fibroids and endometrial hyperplasia without atypia. I was having profuse postmenopausal bleeding and was anaemic. I was given U/S and the radiographer reported that one of the "highly vascular masses" was "highly suspicious for uterine leiomyosarcoma". I was passed on to a gynae-oncologist who did biopsies and ordered MRI and CT scans. I was told prior to these scans that a full hysterectomy would likely be recommended via a lateral incision because of the size of the uterus and because it was difficult to differentiate between a degenerating fibroid and a leiomyosarcoma via scans.

I'd had these three fibroids for many years and no-one had had any previous concerns about possible sarcomas. However, the MDT decided on the basis of the MRI report that the largest "mass" had more features of a large, degenerating, pre-existing fibroid which had continued to enlarge post menopause. My gynae-oncologist argued on my behalf for a conservative approach and I kept my uterus.

oh dear so sorry you went through all of that with no actual proper explanations. I think there should be studies ( maybe there are) on what all of this waiting actually does to mental health. I’m kind of in the same ( but different) boat atm. I have been chatgpting and googling madly trying to work out what this third breast lunp I’ve got could be ( have had mri and am now waiting on biopsy results) breast cancer s (different types) in each breast over a 24 year period both behaved themselves after loads of treatment and now this new lump in the breast treated 24 years ago ??!! Might I be an extraordinary person who has three primary BCs? Could it be something much worse or nothing much ? Like you, me and DH are creeping round not telling our now adult kids ( they’ve already been through it twice with me ffs!!) and I’ve now told two childhood friends IRL and my lovely boss cos of appointments. Don’t want to tell anyone else yet a )cos of kids b) various reasons , fuss, sad looks etc .So huge understanding hand hold from me !! Hopefully it’ll turn out to be not much for both of us x

Hoping you are not waiting long for the MRI and that the results are good and that whatever the mass is, it is benign. I have everything crossed for you 🙏

I am so sorry to had to face such disorganisation in such a stressful time. It’s disgraceful. I’m sending you a continued hand hold and hug

Good to hear you are in there.

For what it's worth I did have a grapefruit size mass on my ovary AND a lemon sized one of the other (AND another grapefruit sized thing on my adrenal gland) and had no symptoms at all.....

Realised at the point of the most severe HG pregnancy, which led to me terminating to save my own life. I had all that in my with no symptoms .... but once I was pg it was horrific....... i had 5 hospital admissions, 2 operations (last one was removing 1 ovary (with grapefruit sized solid mass made of teeth and hair and stuff) through open abdominal surgery, but they managed to keep the other ovary by some amazing surgical skill, so I didnt wake up in "instant menopause" which was a possibilty when I went under.

My blood results were bad, and kept moving towards cancer BUT it was made very clear that the pregnancy could also scew the results to suggest cancer when it wasnt.
The discovery of yet another mass in me (when it was finally taken seriously that vomitting diorreah was more than simple HG) made it seem even more likely that there was something really bad in me, but there wasnt.

So good luck and there really is hope.

I was told (at midnight, on my birthday) to prepare for the worst diagnoses, but thankfully that was wrong.... and all 15 blood tests which were moving further and further to showing bad signs, were "wrong" (affected by hormones etc).

I hope my story gives you hope xxx

@Nonamelass gosh two primaries is bad enough but possibly a third. Hope you are doing as well as can be whilst you wait.

Thankyou 💕 Xnax is my new friend at the moment! I’m late 50s which is a whole lot better than when I was a young mum so that kind of puts it into perspective and tbh I think touch wood I can cope with a not too nasty primary as long as that’s all it is ,I also absolutely trust the hospital that I go to. I just really don’t want to put my family through it again but hey ho what will be will be.

@Nonamelass yes you've definitely got to have faith in them. Unfortunately I'm now secondary with young kids myself but you just hope for the best don't you. Hope your wait isn't too long.

Thank you OP for your update. I too have been thinking about you, especially in the small hours, when I wonder if you’re also awake worrying.
Everything remains crossed for you.

Oh I’m so sorry to hear that The treatments are really good and improving so quickly for it now , so yes you are definitely right to hope for the best and to have faith in your doctors. thanks again and sending you warm best wishes .