Question re:symptoms and DVT

[Zara-LouiseD]

I have been diagnosed with an unprovoked DVT in my subclavian vein and in my internal jugular vein on the left side. Because there seems to be little explanation from my blood tests I am due to have a full body CT next week to search for possible malignancy.

I have been to my GP a few times in the last year with lower left sided abdominal pain (sometimes radiating into my hip and thigh), bowel habit changes and more recently, bleeding between periods/previously regular periods now 12 days apart then 26 days - and also some pain during sex and sometimes a small amount of blood after sex. I’ve had swabs and examination which was all fine and told it’s probably menopause as I’m within 7 yrs of expected time. I’ve also had a change in urinary habit which I haven’t been to the GP about as it didn’t seem important but it seems like I have to make more of an effort to wee (I thought it was because I’d been doing pelvic floor exercise more often) I go to the loo frequently anyway as I drink quite a lot of liquid with Sjogrens making my mouth dry. If I press on the area of my lower left abdomen where I get the pain, there is a really sharp pain. I did have some bloating, but since doing intermittent fasting I only feel full and a bit bloaty with no visible bloating. I’ve also lost a lot of weight very fast with the intermittent fasting so I can’t say it was totally unexpected weight loss - but I am struggling to keep my weight up and have dropped below my target.

Have any of you had a DVT linked to ovarian cancer prior to any treatment for cancer? And do my symptoms seem a strong possibility for OC?Apparently malignancy is the second cause of a clot in the unusual location I have mine 🤷🏻‍♀️

I hope I’m not just wasting everyone’s time reading another post from a worried newbie who should probably just wait for the results of her scan! My maternal grandmother died from breast cancer at 40yrs old and my mum wouldn’t get tested to see if she has the BRCA gene. I tried to get a test when I was 16 but they said my mum had to get it (or get cancer) before I could have the test. There are no other older females in our family apart from my mum, so there’s no way to get a better idea of genetic risk without a test.

I did have a CA125 test last August which was low at 7.5 and I was supposed to be referred for an ultrasound but the appointment never came and I didn’t chase it with all the Covid stuff going on.

I hope everyone is as well as they can be, and thank you for reading my post.

[Lyndy]

Hello, please don’t feel that you are wasting anyone’s time… you are worried and we all understand what it’s like to wonder anxiously and not to know for definite. Your symptoms sound similar to possible OC symptoms but, here’s the rub, OC symptoms are often so vague that they could be a number of other things.

It sounds like your medics are taking it seriously and sending you for a scan. I am not aware that DVT is linked with OC particularly but others may know more. Hang on in there and see what the scan shows. We sometimes have to keep pushing to get a diagnosis, whether that’s OC or something else…but you seem determined to find out, which is good. Very best of luck, look after yourself because this is stressful xx

[Zara-LouiseD in reply to Lyndy]

Thank you Lyndy

Yes I’m definitely determined to find out what is going on and am hoping that there is some other explanation… the 14 day urgent CT request is what alerted me to the fact that they are looking for possible ‘occult malignancy’ as it seems to be referred to in articles online. Apparently tumours can release something that triggers the clotting cascade and a subclavian DVT is one that is caused by brain, breast, liver and ovarian cancers if I remember correctly.

Which is why I was wondering if anyone here had actually experienced this prior to, or during diagnosis and been aware of their DVT?

My DVT has literally caused only a distended jugular vein and none of the pain, redness and swelling usually associated with clots caused by other things like thoracic outlet syndrome- if I hadn’t sought medical advice about the bulge I would be none the wiser!

My clotting time etc has come back normal with no low platelets as seen in the vaccine induced clots and there’s only one blood test outstanding which could indicate sticky blood, but it’s the IgM test and the IgG test of the same was normal.

I’ll try not to stress too much!

Thanks again for replying xx

[Spongebobby]

Hi Zara please don’t hesitate to go back to the doctor as I had, what medical professionals thought was a complex cyst on left hand side, which they said would be fine to just monitor! I was advised the pain was on right side of pelvis could be deferred pain from cyst and as CA125 was low there was little thought given to cancer. Only after a CT scan did they realise the pain on right hand side was in fact a DVT in my iliac vein, considered to be a a result of stickiness in blood caused by the clear cell cyst which turned out to be stage 2 OC. Full hysterectomy, lymph nodes and omentum removal, 6 months of chemo later and I’m back in the game and now in remission. If it hadn’t been for the clot I would’ve gone along with their assessment of monitoring for three months and god knows where I would be then. Hope you get this sorted but don’t accept the first thing they say as professionals DO make misdiagnosis! Feel a tad angry, sorry Zara but you are absolutely right to be asking questions! Good luck darling!

[Zara-LouiseD in reply to Spongebobby]

Thank you my lovely

I’m sorry to hear that you have been through all that, but I’m so pleased it was picked up and that you are now in remission- that is amazing!

I really am going to be on this now. You read things about DVT being provoked by occult cancers, but it is always helpful to hear from people that have actually experienced this happen.

I was researching ovarian cancer symptoms last year when I thought I might have some symptoms but my doctors just put some of it down to probable peri menopause and didn’t do anything else when my blood tests and gynae swabs were clear. I was supposed to be referred for an ultrasound but I never got an appointment and it was at the height of Covid so I didn’t chase it up.

This is why I’m suspicious of OC being the cause of this rare DVT and with the hospital wanting to do a full body CT so quickly - especially since I’ve already had head, neck and chest done and they didn’t reveal anything…. Although the radiologist initially missed my DVT and it was an eager A&E doctor who got a vascular specialist to look at the scans because he couldn’t understand how my jugular was distended for no reason…..

I hope that you stay well and thank you for your reply xx

[Spongebobby in reply to Zara-LouiseD]

Thanks Zara… my tummy issues have been ongoing for years and professionals have always been down the ‘digestive route’, ‘food intolerances’, stress related tummy but it was in fact all along, undiagnosed endometriosis that was causing me aggravation. So here I am now and all this feels like an out of body experience, the only reminder is the scar and the short cropped hair! One thing that really helped me was being well informed so nothing came as a shock, it’s just the way I manage stuff in every day life so I applied the same approach with the OC, that and keeping a reflective journal kept me sane and in control to some degree. I suppose everyone has their own way of dealing with such a horrible life event and you will find yours, I’m sure. Practice a bit of mindfulness and stay in the present to avoid worrying yourself silly about the future darling, think about all the things you can be grateful for during this time, for me it was that none of this was happening to my kids…keep in touch and I have everything crossed for you and yours, much love xxx

[Jenjill47]

Hi Zara, after diagnosis of stage 3 ovarian/peritoneal cancer, and only during chemo was I diagnosed with a clot in the iliac vein. This resulted in a very swollen leg and foot. I was prescribed a blood thinner drug and everything is back to normal now. I suspect (as I have done) that you are jumping the gun and I know that the waiting for tests and scans are excruciating. Try not to investigate symptoms online, if you can. They can scare the heck out of you. I know it's hard not to.Wishing you all the best and good knowledge from your medical team.

Let us know how you go!

Jill 🐨🐨🐨

[Zara-LouiseD in reply to Jenjill47]

Thanks Jill

I understand that clots can occur as a result of chemo, which was why I was trying to get an idea if anyone had been diagnosed with DVT at time or before diagnosis.

I’m sorry to hear that you have had OC and the complications of a clot, but glad to hear everything is back to normal now!

Thank you for your reply xx

[Gemmyw]

I collapsed with a number of clots in my lungs 10 months before being diagnosed with OC. My GP and NHS consultant blamed them on the contraceptive pill at the time. I was 39 and otherwise fit and healthy. I wish I had known about the link between clots and certain types of cancer as I would have queried it and pushed for further testing. When the diagnosis came 10 months later it was a total shock and already at stage 4b. A bunch more clots were found then too. That time delay has, quite possibly, cost me my life. My prognosis is now measured in months, but if it had been caught earlier....who knows?

Please, please, please chase up the testing and push for a CT scan xx

[Zara-LouiseD in reply to Gemmyw]

I’m so sorry to hear this 😔 I can’t imagine how difficult that must be for you and thank you for taking the time to reply to me.

The only reason I’m aware of the association is because there seems to be no good reason for this clot and I have been doing some research. I have a level 3 qualification in anatomy, physiology and pathology so thankfully I’m not just a naive googler who doesn’t know what they are reading and I do try and find good information from reliable sources - reading medical papers from studies where I can get access.

I will be chasing the blood test tomorrow and the scan! I have the excuse of them only prescribing a limited number of Tinzaparin injections and I will run out on Wednesday… because I was supposed to have the scan last week and them decide whether to put me back on blood thinners in tablet form or not…

Thanks again for your reply xx

[delia2]

Hi. I had a dvt in my calf around the time of my diagnosis with OC. I also had a year of trying to get tested before my OC was diagnosed. The chance of getting blood clots is greatly increased with OC so you are right to be concerned. I hope that’s not what’s wrong with you but you do need to be a squeaky wheel until you get some answers. Also my CA 125 was 8 when I was diagnosed with stage 3b.

[Zara-LouiseD in reply to delia2]

Thank you for your reply and confirming that OC does indeed increase the risk of clots and that a low CA125 can occur in the presence of OC!I will definitely not let this lie until they have scanned my abdomen and found out one way or another!

I hope that you are currently well xx

[SASSY196]

Hi, no personal experience but met a lady in a waiting room just over a year ago who told me her oc was inadvertently identified when she collapsed with pulmonary embolism in lungs. She felt blood clots potentially saved her life!!! Very good luck with getting intervention you need xxx

[Zara-LouiseD in reply to SASSY196]

Thank you for replying with that information.

I hope that is the case for me (the clot possibly saving my life) if it turns out to be caused by OC. I’m also thankful to have notice my distended vein immediately and got blood thinners before I got to suffer PE from this clot!

I hope you are well and thanks again for your reply xx

[Trickysite]

I have EDS and just had 2nd chemo for OC stage 4b and am really worried that the surgery to remove the tumours on both ovaries, my omentum and my stomach will result in muscle weakness and spasm from which I won’t recover and would love to hear from anyone with experience of such a major operation, what steps they tookbefore and after and how it all went. Ihave EDS grade 3 and get long lasting spasm and weakness which can take 2 years to recover if my lower back goes. I am permanently on celecoxib and low dose diazepam for EDS. To Gemmyw, although I am stage 4b OC, I have been told by DR Angela George at Kensington Marsden that, if they get me through chemo and op, with a bit of luck I may have years to live and something else may finish me off! This was a second opinion as I was not given any cause for hope at my original consultation except to hear there was an 80% chance of recurrence of OC within 18 months, which I took to mean would be the end. I know we are all different in our OC journey but try a second opinion and remember the mantra stats are out of date.

[Zara-LouiseD in reply to Trickysite]

I’m sorry to hear that you are having such a hard time with OC and the additional issues with your EDS.It might be a better idea for you to put your post on the group separately too so that you get some help from everyone rather than just the lovely people that have responded to my post.

I hope that your surgery goes as well as it can and that you don’t suffer additional problems as a result of EDS xx

[Trickysite in reply to Zara-LouiseD]

Good idea and good luck with everything.

[Cumbrianlass5]

You are not wasting our time. Keep pushing for an urgent scan. It could well be nothing too serious but you need to be sure. I had no real symptoms except felt my bra was too tight, bowel movements more frequent and pee steam not as forceful as usual. Went to doc with pain in right kidney and hip area which I thought was another kidney stone. Turned out it was stage 4 high grade ovarian cancer which had been found so late it was inoperable! We all hope and pray that your problems are linked to something far less frightening than cancer, but even if it is there is a lot they can do for you. Mine is inoperable but have had chemo to shrink it and now on parp inhibitors to stop its progression.

Push for the scan but don't worry too much. Your symptoms could be many things. Sending love and hugs x

[Zara-LouiseD in reply to Cumbrianlass5]

Thank you for your reply 🙏🏻

I’d like to say your reply reassured me, but having very similar symptoms it has definitely reassured me that I do need to get a scan done as soon as possible.I have just been in touch with the hospital and they seem to be dragging their feet with the CT scan - but I have got them to refer me to gynaecology for an ultrasound in relation to checking my ovaries. The doctor that was dealing with my blood tests and CT is on holiday this week….. but the other Dr I spoke to said it might be due to radiation exposure that the CT is being delayed, as I have had an X-ray and 2 CT scans in the last 3 weeks.

They claim they still can’t see the blood results that they are apparently waiting for in relation to possible anti phospholipid syndrome/sticky blood.

Im sorry to hear that your OC is inoperable and pray that the PARP inhibitors do their job.

Love and hugs back at you xx

[Cumbrianlass5 in reply to Zara-LouiseD]

Thanks my dear. Hope you get everything sorted soon x