hi husband very recently diagnosed with mixed connective tissue disease and informed by Rheumatologist has some antibodies which show a hidden cancer-but no evidence of cancer seen on scans/CTs. Very worrying, anybody else had experience of this pls Thsnks so much
related cancer risk: hi husband very recently... - LUPUS UK
related cancer risk
Written by
Jrob14
To view profiles and participate in discussions please or .
35 Replies
•
I'm sorry you have such an insensitive doctor - but are you sure you heard everything they said? Or did they put it badly when saying something like "this antibody MAY be associated with cancer and so we have investigated but there is nothing to be seen on the scans we have done". It probably means there is an INCREASED risk of developing a cancer but that isn't the same as saying he already has cancer or even that he will definitely develop cancer in the future.
It is true that there are biomarkers that are associated with cancer risk - but their presence doesn't always mean that the person HAS cancer. They can also be raised with other things - for example, my daughter had a very high Ca-125 level, often associated with ovarian cancer and so that must be considered as a possibility and looked for, but in fact it is due to endometriosis, very unpleasant and debilitating in its own way to put it mildly but not cancer.
This paper discusses it - the introduction and the discussion aren't too bad to read if you have some scientific backgrounds but I know most people don't.
pmc.ncbi.nlm.nih.gov/articl...
What is fair to say is that this is a new field and work is being done all the time. It is clear that certain markers have already been noticed to have a link with cancer developing at some time - but not 100% of the time, Everyone would probably develop a cancer if they lived long enough - already we know that about 1 in 5 people will develop a cancer in their lifetime and the likelihood increases as they get older.
This article from the Mayo clinic explains cancer risk:
mayoclinic.org/diseases-con...
Often early studies find something that at first sight appears to be a link - but when they do lots more and longer studies the link is found to be weaker than they thought, But having a signpost can also be useful - because they are likely to keep a closer eye on him for anything changing that might be more concerning.
thanks so much for taking the time to write such a comprehensive reply. Each of my husbands 3 consultants (rheumatologist gastroenterologist and Physican) have all commented on an antibody which my husband has that can be linked with a hidden cancer. My husband has had loads of investigations and scans so I’m almost comfortable that he doesn’t have cancer yet. Just wondering what this specific antibody was-I’ll ask at next review. Thanks so much again
Yes, do. And please do tell me as I am really interested.
I am a great believer in not worrying about something that only MIGHT be - cross that bridge IF and WHEN you get to it. It is hard having a partner with a chronic illness like MCTD and even harder when they develop cancer - I know, my husband brushed with cancer twice. The first time it was found very late due to a rather dilatory GP but he survived it and we had another 25 pretty good years. If they know they should be keeping an eye on him it is likely to be found early and early detection means better treatment options.
it’s been incredibly hard to accept that my husband has been so ill n has MCTD-he’s always been very fit n was running up mountains at the beginning of august-by the end of the same month, couldn’t eat, had difficulty breathing/walking, losing his hair, joints very painful and swollen knees-lost 3 stone in 8 wks!
Now taking steroids and just commenced meophenolate and hydroxychloquine (don’t think spelt right!) for life.
How does everyone cope?
I have a different autoimmune disorder so not really able to talk that much about MCTD because there are other symptoms and a choice of medications which there isn't for my disorder. It is pred or pred in the UK!
Mycophenolate and hydroxychloroquine so you know the spelling. It may not be for life, they are the first line approaches but if they don't work they will try other things. It is all about finding the medication that works best for THIS patient to control symptoms and there are newer drugs being identified all the time. But they start with the tried and tested (and it has to be said, cheaper) alternatives because there is always the possibility that while they work at first they may not later on so they keep their heavy guns for later.
There are now biologics for many CTD disorders but they are much more expensive - well over £10K per year for many though they are coming out of patent and becoming a bit cheaper now, and they are also very heavy duty medications, administered as infusions or injections rather than pills.
How do we cope? I suppose you just get on with it, there isn't much of a choice really. My experience of autoimmune disease is less awful than my experience of cancer with my husband, he had it twice but with years between of fairly decent life. Living with autoimmune disease possibly requires a big readjustment in lifestyle - this post of mine on another forum may help understand a bit
healthunlocked.com/pmrgcauk......
It is also on the Lupus forum but this is the link I have to hand. Resting and pacing are essential - you can't really cheat or the illness will turn round and bite back. But you do learn to live with the gorilla, you lose many things from your former life but you also gain many things when you look forward and not back. You continue to do things - but differently. It is very hard at times but humans are very adaptable.
I think your reply is excellent. I have Systemic Sclerosis and Sjogren’s rather than Lupus. However, like you , I come here sometimes because there are overlap CTDs where sometimes people are unaware of rarer or different autoimmune disease - but have some pointers that would indicate these. MCTD can often be one such and this was one of my wrong diagnoses prior to Systemic Sclerosis being unequivocally confirmed in 2023.
I also have seronegative Sjogren’s but was told that only having seropositive (anti Ro) Sjogren’s makes people more at risk of lymphoma than general population. I’ve had several CTs just in case symptoms such as night sweats were this. Thankfully not although the treatments I’m now on, particularly Rituximab, would’ve been the main treatments anyway and Sjogren’s is associated with the least serious type of lymphoma, called Malt.
I also read in latest BSR guidelines published this year and was told that having Systemic Sclerosis means I have a significantly increased risk of certain cancers, mainly breast, lung, skin and oesophageal/ GI. This doesn’t actually worry me much because in my family, on both sides, it tends to be vascular diseases that kill us off prematurely - although the few who have lived beyond 70s have had cancer. But as you rightly point out our risks increase with age and both my aunt and uncle have been effectively treated for cancer and long outlived my own parents despite cancer.
Whereas Systemic Sclerosis carries a 50% mortality risk, meaning that one in two will die directly because of it and more will die indirectly because of their systemic sclerosis. 3 out of the 5 people I have known with systemic sclerosis have died prematurely due to pulmonary disease. This is the highest mortality risk associated with any rheumatic autoimmune disease and mainly relates to heart & lung involvement. So yes I have a higher cancer risk due to Systemic Sclerosis and am getting a colonoscopy due to having new rectal bleeds with my stoma. But my much bigger concerns would be developing heart and lung involvement (PAH or ILD) or sudden renal crisis or GI failure, which I’m already quite close to and which can cause sepsis.
So yes there are autoimmune diseases such as Sarcoidosis, Sjogren’s, Scleroderma and Dermatomyositis which are more associated with some cancers. However it seems emotive and unnecessary for a rheumatologist to refer to these during diagnosis, especially given that there are also many other equally concerning risk factors which can be mitigated or even prevented through early diagnosis and treatments.
I think you are conflating risk of cancer in autoimmune disease to auto-antibodies that are produced when cancer is present. The autoimmune symptoms and antibodies are a reaction to the hidden cancer. It is critical to find the cancer.
I didn’t conflate anything thanks. If there’s cancer then it will most likely be found because the rheumatologist is obviously concerned enough to run all the tests. But as PMRpro said, “might have cancer ” is not the same as “you do have” and if extensive scans and imaging have so far shown nothing then presumably the increased risks are similar to many of us here. There are many things that indicate we have an increased risk of cancer or other potentially fatal diseases. But if tests so far show that we don’t then that’s good - life’s too short to worry about what may never happen. What matters is that we are correctly diagnosed and properly monitored. No one is immortal.
Paraneoplastic syndrome, if suspected, is not monitored. It is an emergency situation requiring many specialists. They are not trying to see if a person with an autoimmune disease also has cancer. They are trying to determine if the patient has a cancer that is causing an autoimmune reaction.
Only the doctors know why this patient is suspected as having a cancer caused autoimmune disease. But they have to try to find the cancer if that is the cause.
They may not even be able to treat the autoimmune symptoms yet.
I sometimes have had indicators that point to paraneoplastic syndrome and been told similar. But when more extensively tested these so far have not shown positive. In fact being on treatments for my autoimmune disease has actually turned my bloodwork and symptoms of paraneoplastic syndrome from positive to negative. If the markers they refer to indicate a paraneoplastic syndrome I would think that this person was immediately given the same tests as I was but nothing has shown for them so far. If they were posting to say that it had already shown then I wouldn’t be commenting in attempt to offer similar reassurance as others here have done as well. I know the NHS can be slower to diagnose or treat cancer than is ideal. However, on the whole cancer is a diagnostic priority in UK and a great deal of NHS resources go into this compared to other non diagnostic departments such as echocardiogram, MRI and other types of screening for non cancer related conditions. I say this because I have strong indicators for chronic gastrointestinal pseudo obstruction (CGP) for example which is a type of PNS - but so far no one has biopsied me or spoken to me about it so I try my hardest not to worry while flagging it up wherever possible.
I have no idea what signs make them highly suspicious of paraneoplastic syndrome. It is considered serious and at least in the US recommended that patients are transferred to a tertiary care hospital.
But the poster hasn’t actually mentioned paraneoplastic syndrome - just cancer - which is a huge umbrella and so far tests have not revealed it - which is reassuring.
She mentioned the rheumatologist found an antibody associated with hidden cancer. Her husband has had lots of scans and so far no cancer has been seen.
Thought he didn’t use the term, she is going to ask him if what he is referring to is a hidden cancer that is his body is reacting to with an autoimmune disease.
The rheumatologist was clear he found an antibody that made him concerned about hidden cancer.
If an autoimmune disease is a reaction to a drug or cancer it is different from us. We may have increased cancer risk depending on the disease but this syndrome is different.
They will have to wait to see. It sounds extremely complicated. The one thing I read recommended that patients be transferred to a tertiary care setting. There were only two neurologist at a large medical center who specialize in this. Now that tells you something.
I won’t continue this discussion further Kay but just reminder that “associated” isn’t the same as actually having cancer. The rheumatologist diagnosed MCTD so could be in exactly same boat as you or I. As I’ve said I have similar indicators of a hidden cancer but so far tests haven’t revealed this. Your replies to me have got me worried for myself now because I’m supposed to be getting scopes and biopsies soon but the NHS waiting lists are daunting and my worsening symptoms are concerning me. Here in UK we can badger and hassle all we like but everything moves at a snail’s pace for many and worrying more is not going to help. So far I’ve rationalised it that if they aren’t really worried then nor should I be. Let’s hope I’m right.
could be in the same boat but clearly the rheumatologist and gastroenterologist were ruling out another cause of mixed connective tissue disease. If they suspected your autoimmune disease was a paraneoplastic syndrome I think they would have begun the search years ago. Your cancer would be very advanced by now.
You have no reason to worry. Seriously. The poster’s doctors were clear with her. A GI consultant was called in. Her husband had lots of scans and scopes.
This syndrome, I think, happens on initial presentation. Tell your doctor you are concerned. I know she will reassure you.
There are likely a lot of auto-antibodies that can be positive from cancer. But a young woman with a high ANA, nephritis and a butterfly rash does not get worked up for cancer.
I have no idea what would make doctors suspicious that autoimmune disease is a reaction to a cancer. It’s rare.
What antibody is it you are concerned about?
You won’t have come across it. It’s a rare scleroderma one. I’m no longer worried about cancer underlying my autoimmune disease but the other way round. It was a worry at the start though and I was sent to various oncology and haematology doctors to test. It’s only a worry to me now because of your replies and because I’m still waiting for tests due to bleeds and new discomfort since my stoma surgery 7 months ago
My replies only had to do with a different issue - the one presented by the poster. I am not familiar with your condition or risks but hope you get reassurance fast.
They have strict guidelines regarding how soon tests need to be done. Your doctor will be able to use those guidelines to get you in.
I'm sorry to hear of your husband's diagnosis.I used to consider myself very well, I did endurance sport and then after decades of no health issues lots of things started going wrong. I was really shocked and worried.
I found getting treatment really helped. After six months on hydrroxychloroquine and now on mepacrine too, things have improved. I am now back to swimming and walking. Lifestyle has shifted a bit but still the same person maybe even more health focused.
If Lupus is part of the MCTD then they should be using Hydroxychloroquine.
I think the confusing word here is "hidden". There are, as you obviously know, antibodies for many medical conditions, but if you have any of these antibodies their presence does not necessarily mean the condition they are linked has actually developed, but that you are more likely than others to develop that condition, although you may never do.
Some antibodies can be raised for a variety of reasons including infection and inflammation, which is the reason for further investigation with blood tests and scans. If these show nothing, then a monitoring process will be put in place.
In your position I would wait until something has been definitely seen and/or biopsied before starting to worry. I do hope things have a positive outcome for your husband.
I think the doctor is concerned about paraneoplastic syndrome. I don’t know how they expressed the situation to the patient, but the patient would need to be told in order to explain the need for many scans.
I know a woman with this syndrome. She was in three New York City hospitals until they diagnosed her properly. Not an easy problem.
Oh yes, absolutely and that is what I was meaning in my original reply. But it doesn't alter the fact there are ways and ways of explaining it to a patient. I'll have all the scans and tests they like without panicking - because I used to work there. But for the uninitiated, mere mention of the c-word blocks out everything else before and after that may be meant to soften the blow. My husband - a healthcare professional at consultant level - heard "cancer" and nothing else. The rest was left to me.
On paraneoplastic syndrome it is more than a link with cancer. It is the cancer that is causing the autoimmune disease. If the cancer is eradicated, the autoimmune disease can go away.
The woman I know is much improved now that her very small breast cancer was found to be the cause of her sudden autoimmune disease.
This is very interesting Thsnks for the info-I will follow up with husbands consultants
Ask your doctors if they think your husband has paraneoplastic mixed connective tissue disease.
I could connect you with a woman with paraneoplastic syndrome. She has stiff syndrome, a very rare disease and even rarer as a paraneoplastic syndrome. It took three hospitals in New York for her to get diagnosed. A neurologist saw her in the emergency room and somehow made the diagnosis. She had had lots of scans. He ordered more. They found a small breast cancer. She is doing much better.
I am sorry you are dealing with this. I think they had to tell you what they were concerned about because the work up is so involved.
Hoping your husband does as well as Frieda.
Kay
thanks I’ve been a nurse for 38yrs in the same Trust in which they are caring for my husband so am used to the drs and all the medical terms and tests, but obv it’s much more frightening when it’s happening to your loved one. I must say our hospital n drs have been fantastic and very quick with all tests, in this way we have been lucky
”Rheumatologist has some antibodies which show a hidden cancer-but no evidence of cancer seen on scans/CTs.…”
-+-+-+
If this rheumatologist is any good he needs to:
name these antibodies specifically showing the “hidden “ cancer otherwise it’s his conjecture?
If there’s no “cancer revealed on the screen” perhaps the supposed cancerous tumour is too small to be detected?
Either way he should stop scaremongering and REFER your husband to a properly qualified, experienced oncologist asap! Some professionals are too proud to accept and know their limitations!👆☝️
We can all make generalist assumptions about “cancer”! It’s a highly emotive word.
This rheumatologist should refer you/your husband to one and write that letter!
He did name the antibodies but we couldn’t take it all in as so much info-also husbands physician mentioned the same thing-didn’t see it as scare mongering more kerp us informed
All 3 of husband’s consultants gave confirmed no evidence of cancer seen as yet thsnkfully
It sounds positive so far. The main thing is to know what the plan is. Will they monitor him? Or are they assured he does not have cancer?
No one would remember antibody name. It could be the antibody is only sometimes associated with cancer. These are questions your consultants can answer.
Good thing the rheumatologist picked this up. You need top notch doctors.
K
I was also diagnosed with MCTD and now lupus, I had NHL, a very rare form of it, I asked my Rheumy if it was connected, but she just said mmmm, not sure. Mine did show with biopsy and scans, it was stage four blood cancer but I had treatment and I’m now five years in. It has come back but now on watch and wait, it’s a slow growing one so just get bloods done every six months now. Maybe they will just keep checking the bloods.
Hi,
I am sorry to hear about your husband. I have had Lupus for over twenty years and have other mixed connective diseases.
Diagnosis and adjustment is always hard especially for someone so fit and healthy. But over time they will get it under control and he will feel better. Having a good consultant is key they are not all equal and having someone who is knowledgeable can make life very different.
In the last year I have had developed weird and wonderful additions, not connected to my lupus that they suspect come from another autoimmune issue.
What is interesting is a very similar experience about cancer but unsure where it is. So whilst doing tests I had a positive 5-HIAA urine test which suggests an endocrine tumour bloods also suggest a cancer issue myeloma. A radioactive PET scan was done and whilst clear for endocrine tumours had high take up 3.7 in Breast suggestive of breast cancer. Referral to breast cancer specialist and biopsy no sign of cancer. All very odd and no one can explain why!
I guess having an awareness is key and getting his other symptoms under control. One thing I will say is be aware yourselves of changes, advocate for your health and I wish him the best for getting it under control and feeling better.
My guess is that localised inflammation can sometimes give rise to the same results eg a bleed or a mass. Our health care system has pathways geared to diagnose the majority of those being assessed but sometimes is not adequate to understand the rest.
They might see more patients for whom cancer is the cause but there has been less focus on the rest, because less investment and training goes into it.
For three years I have been an occular oncology patient. My angiogram scans of a small lesion giving the opposite patterns of fluorescence to what one would expect. Nobody has taken an interest in this or given me an explanation and I was recently discharged when I asked about why it was the opposite to what one would expect. I still have symptoms but there are no pathways or clinics that match my presentation.
Blood rssults and scans can be reviewed by specialists working anywhere and sometimes we never get to see them to see the results or get an explanation of anything.
I am wondering whether the new artifical intelligence technologies will be broad enough to capture rare conditions and explain the symptoms we have
Apologies for late response.
I had the same experience as your husband. However, it was stressed to me that the main focus of the Rheumatologists was to get MCTD symptoms under control. I admit to being upset initially but I just made a point of being vigilant and mentioning any concerns/new symptoms to doctors. This has meant prompt and early treatment of a new cancer. I also had cancer treatment twenty years ago so know it is not always a word/diagnosis to be dreaded.
Hopefully once your husband is on the right medication for his MCTD he will feel much better and both of your stress levels will be reduced.
Jrob14 -
It sounds like a scary situation. What could be happening is your husband’s rheumatologist saw some signs that a hidden cancer is causing the autoimmune disease. This is rare but does happen when the body reacts to the cancer in with this self-attack.
It seems the doctors have completed the scans, right? Are there more tests ordered?
I can’t imagine how confusing this must be. I know a woman with this syndrome. She is doing well now but still not clear what happened.
I hope they get this figured out soon. Your husband must have a team on rheumatologists, oncologists and radiologists working to get to the bottom of this.
My friend’s doctor asked if he could write her case up. Shows you how challenging it is.
Hoping for the best.
Kay
Not what you're looking for?
You may also like...
CT scans and risk of cancer
I recently had a DaT scan to check whether I have Parkinson's. The scan involves an injection with...
Prostate Cancer
Hi to all of you wonderful people. I was not sure which post to write this on as it is particularly...
Thyroid problems, cancer?
Hi everyone, I am new to this, but am going through thyroid problems. Its been 7 mo. since it all...
Lip cancer
Hi all. I went to my go with a spot on my lip which had been there for a long time, my husband...
Lupus and cancer
I have just been diagnosed with breast cancer and was wondering about other peoples experiences...
Lupus & Cancer
Breast cancer and Lupus.
Thyroid cancer!
Cancer update 
