I might have cancer- two week referral- scared!

[BelAnna]

Hi All,

So I went to see the GP (despite contamination OCD and being scared I'd catch a virus). I saw a health care assistant first who asked the GP to look at the redness and marks on my bust. He's made an urgent 2-week cancer pathway referral to the breast clinic and I'm terrified.

It does not look like anything but cancer. 

I don't really know how to cope. That type of cancer (inflammatory breast cancer) would reduce my life expectancy massively and mean I can't have kids (I'm 30 and wanted to get married and have kids). I'm very scared.

[Gemma7]

Being scared is natural,  but the two week appointment thing is standard protocol. The type of cancer you mention is rare and incredibly unlikely. I know this is hard but worrying about it is not going to help you one bit. 

Time to get on as if this isn't happening for a bit. 

[Gemma7]

By the way well done for facing seeing a doctor, i can imagine how hard that was for you, so really well done

[Lynz]

Gemma is right. It's standard procedure to be referred in 2 weeks. I was referred to have an odd mole looked at by dermatology even though the GP said it was unlikely to be malignant. I was seen in 2 weeks and the mole turned out to be nothing. Similarly I've been having some GI bleeding recently which the GP has put down to benign causes but I was referred just in case. I was seen in 2 weeks by a consultant who is sending me for further tests but he's almost certain they'll be fine too so I'm not worried.

You're making some crazy leaps here for which you have zero evidence for and which are very unlikely. You've basically gone from 2 week referral = cancer = going to die prematurely = not being able to get married or have kids, when really all you have to deal with is the 2 week referral.

[Angst]

First of all, well done on visiting your GP.

Keep yourself busy for the next two weeks. Autumn is a great time for walking. Could you book a break with family or friends?

As you said in one of your posts supporting another correspondent, and echoed on this thread, most cancer checks contain good news.

[Bodger]

Well done for seeing a gp firstly.

I have been in a similar position but with my testicle, which did turn out to be cancer.

The 2 week referral is perfectly normal and is for anything which has even a remote chance of being cancer.

I did not cope at the point your at (which I hope turns out to be just a scare for you). Phone McMillan cancer charity, they helped me understand what was going on as it is hard to take in info when the word cancer is used.

If the worst happens, cancer is not the death sentence it used to be. Yes it was a very hard time, but I am currently 2 years into remission.

I got support with my OCD throughout treatment from the cancer hospital, without this i would not of coped.

Also please do not use the internet, everything it said turned out to be wrong for me. The consultants are the people to listen too.

If you want to chat let me know, as I know what your feeling right now.

 

 

Edited October 25, 2018 by Bodger

[Dragonfly]

Hi BelAnna,

Well done on going to see your doctor.

I totally agree with Gemma and Linz, it is the usual protocol. And IBC is very rare as they’ve said. 

I think some doctors refer as they’d just like a breast specialist to check out whatever it is too. I was referred too the last time, first doctor didn’t refer me though but then another did. All was absolutely fine, yet I had a few things that were on the list of things you should get checked. 

I know it’s hard, but the best you can try to press pause on this until your appointment, really busy yourself and do not check yourself anymore, you’ll just heighten your anxiety x

 

[BelAnna]

Thank you Dragonfly, Bodger, Angst, Lynz and Gemma. 

Bodger, I'm really sorry you had to go through that but so glad that you're in remission now too. 

Dragonfly, thanks, I think it's just that I have skin texture changes (the pores are enlarged), redness covering a portion of my breast, a blurry/poorly defined areola (like a rash has eroded it or something?), obvious veins with mottled appearance and a big inflamed bite-like mark that doesn't itch. I do have symptoms on both sides though, which is either very worrying or just makes it less likely- I'm not sure. The Urgent practitioner looked, agreed it looked unusual and called the GP in, who didn't hesitate to refer. He didn't say that there was any other possible cause so that worried me a bit more. 

I also looked on an IBC website (very silly!) last night and someone with identical symptoms to mine did end up having IBC. 

Thanks Lynz, you're right I could be panicking but I'm not sure whether I'm just concerned really. I hope your GI bleeding isn't anything serious and that your tests go okay too. I have blurry vision tonight and I'm already jumping to concerns about secondaries and other unlikely things.

Thanks Angst, that's really true - I love going for dog walks and looking at all the pretty autumnal leaves! 

[BelAnna]

20 hours ago, Lynz said:

Gemma is right. It's standard procedure to be referred in 2 weeks. I was referred to have an odd mole looked at by dermatology even though the GP said it was unlikely to be malignant. I was seen in 2 weeks and the mole turned out to be nothing. Similarly I've been having some GI bleeding recently which the GP has put down to benign causes but I was referred just in case. I was seen in 2 weeks by a consultant who is sending me for further tests but he's almost certain they'll be fine too so I'm not worried.

You're making some crazy leaps here for which you have zero evidence for and which are very unlikely. You've basically gone from 2 week referral = cancer = going to die prematurely = not being able to get married or have kids, when really all you have to deal with is the 2 week referral.

Oh also just to ask Lynz, as I think you are in nursing/medicine (?)- do you know of many benign causes of reddening of the breast? It's not on the skin surface (i.e. not eczema or dermatitis) but more of a vascular type redness. It's not warm so not mastitis or cellulitis. I cannot think what could be causing it apart from IBC at the moment but there might be other potential causes. 

Maybe some people just have normal variation?

I'll try to stop panicking and get on with things now!  

Edited October 26, 2018 by BelAnna

[PolarBear]

Stop Googling. Stop asking people what else it could be. Stop examing yourself. Leave it alone. You have an appointment. That's it. None of these compulsions you do will make things better for you.

[orange]

I understand you are worried but it's really rare and could be other things. Anything you can do to keep yourself busy in the meantime. And don't forget the internet (and women's magazines for some reason) are full of scare stories but not the good news stories. I used to be a hypochondriac (probably from reading my mum's magazines when I was young) until I developed OCD but learning about people who had healed from serious illnesses with complementary medicine (allopathic plus alternative medicine) really helped. Plus anecdotally and in some research cannabis has been found to have anti-cancer properties. A few years ago I had a bladder infection that was resistant to many antibiotics and got quite scared. My naturopath told me, 'there is always something you can do,' which really helped. Another time I was told I had a tumour on my ovary (from an ultrasound) and the doctor refused to reassure me. Then I was told to wait for a month and do another ultrasound. It was gone and I was fine. Hope you feel better soon about this. x

[BelAnna]

Thank you Polarbear and Orange!

Thanks Orange- that's really helpful. I'm so glad you're ok after that worrying time too! x

Today I am going to stop being silly, realise it's unlikely that I have anything nasty and get on with things whilst eating a bit more healthily than I normally do and spending less time sitting! That's the plan. I'm going to stay away from google!

Edited October 27, 2018 by BelAnna

[Dragonfly]

Good for you BelAnna! It’s great they’re being thorough, but there’s also lots of other reasons usually too why our bodies react the way the do, and a lot of the time it’s something and nothing! 

Stay positive and keep busy! X

[BelAnna]

 

12 hours ago, Dragonfly said:

Good for you BelAnna! It’s great they’re being thorough, but there’s also lots of other reasons usually too why our bodies react the way the do, and a lot of the time it’s something and nothing! 

Stay positive and keep busy! X

Thank you Dragonfly! It didn't work out so well in the end- I've been feeling so so scared! 

I've developed a swollen neck, sore bust, sore chest and visual disturbance and I have enlarged pores under my bust, which I cannot find an explanation for apart from inflammatory BC. 

Whenever I try to watch a film/TV or do anything all I can think about is googling my symptoms and about the possibility of dying soon.  

 

[GettingBetterDaily]

57 minutes ago, BelAnna said:

 

Thank you Dragonfly! It didn't work out so well in the end- I've been feeling so so scared! 

I've developed a swollen neck, sore bust, sore chest and visual disturbance and I have enlarged pores under my bust, which I cannot find an explanation for apart from inflammatory BC. 

Whenever I try to watch a film/TV or do anything all I can think about is googling my symptoms and about the possibility of dying soon.  

 

Hi there BelAnna, I just read your post and wanted to pass on something that may help.

My mum and my best friend have both had treatment for cancer in the last year. My friend Non Hodgkins Lymphonia and my mum urethra cancer. My friend is now better and is buying his first house with his gf and my mum has her final scan next which is looking good.

I know there is the other side of the coin for some people but so many people survive nowadays. Plus, there is so much in the media about it now that it is only a matter of time until society boosts up its pressure on the drug companies to come up with a bit more than what we are given at the moment.

Honestly, and I really mean this, whatever your results are you can always be surrounded with help. 

I’ll hope for the best for you :-)

Edited October 28, 2018 by GettingBetterDaily

[daja]

Keep off Google! x

[orange]

Could you have mastitis or an abscess? You don't have a fever or anything? Did your GP mention any other possibilities of what it could be? If you have a fever you probably should go and get it checked out earlier. Don't forget, while it's most likely nothing to worry about, that some forms of cannabis seem to have done amazing things for people with cancer. So has diet.

Please don't google though. Do you have family members who can distract you and help you feel better while you wait? x

[Emsie]

Hi BelAnna,

First if all I’m so sorry that you are going through this.

My main OCD theme right now is health and I’ve had it on and off for years and I cannot stress this enough.......do not Google. I know the urge is so strong as you are looking for reassurance, but it doesn’t work like that. If you are anything like me you will believe everything you read and personalise it all to yourself. I always look at what I call reputable medical websites and journals and I use that as an excuse to myself but they can NOT diagnose us.

I have a scientific background so I can understand most things but I’m not a medical professional. Reading symptoms and relating them to our own is dangerous because the written word and reality cannot be linked without medical experience. As an example I was once concerned about a lump in my knee and through googling I thought I had a rare type of soft tissue cancer. Why did I think that?.... because I read that a lump is a symptom. But when I went to the GP they said it was nothing to worry about because it doesn’t present like that. 

I’ve been referred several times for breast lumps under the 2 week system. I had lumps, which is a symptom, but it wasn’t cancer, just cysts. I’m saying this to illustrate that even when our symptoms match it still doesn’t necessarily mean the worst. 

One time I had a red patch on and around my nipple and a lump behind. I googled and my symptoms matched a rare and agressive form of breast cancer and I convinced myself that’s what I had. I panicked, saw the GP and was referred and it turned out to be eczema and a cyst. Again, illustrating I am not good at diagnosing even when on paper my symptoms ‘matched’.

Unfortunately, you won’t know anything until you go to the breast clinic, the experts know, we don’t. I really hope you hear soon and you have your appointment soon. In the meantime, if you google you’re only going to make yourself feel worse. I know this is hard but please try and park it for now. 

I’m sorry if I sound firm, I don’t mean to, I just know how much pain I’ve caused myself over the years and I don’t want you to cause yourself any more. I wish you everything for your appointment.

Take care and I’m thinking of you. X

 

Edited October 28, 2018 by Emsie

[BelAnna]

Thank you so much for the support guys.

I am quite seriously not coping at the moment and I'm sorry for hogging lots of forum threads but OCD has meant I've become isolated and do not have lots of friends to turn to when things are tricky. 

I've developed a shingles rash and have had a throat infection for three weeks- I am never normally ill so I'm quite concerned as usually shingles is a  sign of lowered immunity. I also have increasing pressure in my chest. The redness around my bust is pinky-blue and is definitely vascular in origin (beneath the level of the skin). I am just so scared as I really haven't lived yet and IBC would definitely mean I wouldn't be alive in 5-10 years.

2 hours ago, GettingBetterDaily said:

Hi there BelAnna, I just read your post and wanted to pass on something that may help.

My mum and my best friend have both had treatment for cancer in the last year. My friend Non Hodgkins Lymphonia and my mum urethra cancer. My friend is now better and is buying his first house with his gf and my mum has her final scan next which is looking good.

I know there is the other side of the coin for some people but so many people survive nowadays. Plus, there is so much in the media about it now that it is only a matter of time until society boosts up its pressure on the drug companies to come up with a bit more than what we are given at the moment.

Honestly, and I really mean this, whatever your results are you can always be surrounded with help. 

I’ll hope for the best for you :-)

Thank you so much Gettingbetter! I'm really sorry to hear about your Mum and friend but that's great that they're doing better. My cousin has non-hodgkins lymphoma too and is such a strong person. 

My worry with the potential for it being 'Inflammatory breast cancer' is that survival rates are some of the lowest rates in any cancer as it's very aggressive and spreads so quickly. It's only ever diagnosed at stage 3 (spread to lymph nodes) or stage 4 (spread to distant organs) so either you go through brief periods of remission with stage 3 or don't survive stage 4. Also I wanted to have kids in the future but IBC would definitely mean that cannot happen. 

It's pretty terrifying. Thanks for helping though- if I have it I'll focus on the fact that new treatments might come up! 

2 hours ago, orange said:

Could you have mastitis or an abscess? You don't have a fever or anything? Did your GP mention any other possibilities of what it could be? If you have a fever you probably should go and get it checked out earlier. Don't forget, while it's most likely nothing to worry about, that some forms of cannabis seem to have done amazing things for people with cancer. So has diet.

Please don't google though. Do you have family members who can distract you and help you feel better while you wait? x

Hi orange,

no I definitely don't have mastitis (it looks vascular and very different) and there's no abscess there. I don't have a lump but do have redness and the signs of IBC. Weirdly no fever despite my shingles symptoms. My GP didn't mention other causes, which I found doubly unsettling! I will look in to cannabis if I get any sort of cancer diagnosis and I have been drinking exclusively green tea, swallowing curcumin supplements and omega 3 capsules, eating lots of cruciferous vegetables and dark purple fruit and cutting down on sugar for the last few days. 

1 hour ago, Emsie said:

Hi BelAnna,

First if all I’m so sorry that you are going through this.

My main OCD theme right now is health and I’ve had it on and off for years and I cannot stress this enough.......do not Google. I know the urge is so strong as you are looking for reassurance, but it doesn’t work like that. If you are anything like me you will believe everything you read and personalise it all to yourself. I always look at what I call reputable medical websites and journals and I use that as an excuse to myself but they can NOT diagnose us.

I have a scientific background so I can understand most things but I’m not a medical professional. Reading symptoms and relating them to our own is dangerous because the written word and reality cannot be linked without medical experience. As an example I was once concerned about a lump in my knee and through googling I thought I had a rare type of soft tissue cancer. Why did I think that?.... because I read that a lump is a symptom. But when I went to the GP they said it was nothing to worry about because it doesn’t present like that. 

I’ve been referred several times for breast lumps under the 2 week system. I had lumps, which is a symptom, but it wasn’t cancer, just cysts. I’m saying this to illustrate that even when our symptoms match it still doesn’t necessarily mean the worst. 

One time I had a red patch on and around my nipple and a lump behind. I googled and my symptoms matched a rare and agressive form of breast cancer and I convinced myself that’s what I had. I panicked, saw the GP and was referred and it turned out to be eczema and a cyst. Again, illustrating I am not good at diagnosing even when on paper my symptoms ‘matched’.

Unfortunately, you won’t know anything until you go to the breast clinic, the experts know, we don’t. I really hope you hear soon and you have your appointment soon. In the meantime, if you google you’re only going to make yourself feel worse. I know this is hard but please try and park it for now. 

I’m sorry if I sound firm, I don’t mean to, I just know how much pain I’ve caused myself over the years and I don’t want you to cause yourself any more. I wish you everything for your appointment.

Take care and I’m thinking of you. X

 

Hi Emsie,

Thank you so much for your reply.

I've not had health anxiety about my own health before (I have for family members and pets!) and I actually think this might be more concern than health anxiety.  

It sounds like you were worried about the same type of cancer that I'm worried about that time that you had eczema and a cyst. I'm terrified that I have inflammatory breast cancer. The redness is definitely in my boob (definitely blood vessel related) rather than on it so that it's definitely not eczema. If you think about a dark under-eye circle it looks like one of those but over a portion of my bust (so sort of pinky/purply) and I have dimpling of the skin and a poorly defined areola (so blurry edges) and bite-like mark so all the IBC symptoms.

I am considering going for a private MRI ahead of my appointment and I cannot decide whether that would be a good idea or not. I know that I am ill- I'm just not sure how ill. I also know that i'm usually in amazing health- able to run, with good lung capacity and I never normally even experience pain so this is all really bizarre for me. 

I have also got shingles and have had a sore throat for 3 weeks now, which is all really odd! 

I am so so scared but unfortunately I don't think it's OCD this time xx  

[Emsie]

Hi BelAnna,

No worries for my reply, I know you are in turmoil right now and I really wanted to reach out. And don’t be sorry, your not hogging anything on the forum, we are all here for you.

I know you said this might be concern and you don’t think it’s OCD this time, but OCD is coming in to play. You are bound to be concerned but also you’re ruminating and googling and all of that is keeping you in a state of fear. It’s fuelling the worst fears for you. If you hadn’t googled you wouldn’t know about IBC and you wouldn’t be so scared as you wouldn’t have that knowledge to relate to yourself. All your learnt OCD behaviours will be affecting this and how you are feeling. It’s those you need to try and curb to help you through until your appointment. They will do you no good and only harm to your mental health.

I’m so sorry that you are feeling so scared, I do know how that feels. I’ve been in the same position with myself and my daughter. Hopefully by curbing the unhelpful behaviours you can make the wait better for you.

Have you got a date for your appointment yet? I really hope it’s soon for you. I wish I could help more and please know you’re not alone. I’ve got a busy day today, but I’ll be on the forum this evening. 

Try to keep busy today and do nice things and go for walks with your gorgeous dog. 

Hugs and love xxx

Edited October 29, 2018 by Emsie

[Angst]

I agree with Emsie that it is your behaviour which indicates OCD. Actual or perceived stressors can aggravate OCD.  A high level of anxiety fuels checking behaviours that further intensify the anxiety. I know it is not easy as I too suffer from OCD checking behaviour.

It seems that your checking behaviour is spreading to more and more parts of your body. And your are checking your observations on Googled sites.

I do not think that a private MRI scan would speed up your appointment with the NHS cancer specialists which is now less than two weeks away.

As we all say keep busy and do active things like very long walks and suchlike.

[Dragonfly]

Hi BelAnna,

Sorry to hear the above.

You have some great advice, and I can only echo that even if it was cancer, there really is so much more they can do for it now. I too have friends who have had breast cancer and they are in remission and doing great.

I know it’s torture waiting for the appointment, but it will soon be here. 

Please do not google anymore, it really won’t help and will only increase your anxiety. I don’t at all anymore because of what it done to be, but I did have to google a symptom that one of my dogs have at the moment and even for that, he now could have anything!! He’s off to the vets later now as it didn’t help at all. 

Try getting out if you’re up to it, or put on a box set, something you know you can get lost in. You may not feel like laughing but even a comedy may help more than you think, an old Friends episode or something! And there’s always the forum here to chat on, and Central Perk for light hearted chat, so you’re not alone! 

Remember this still could be something and nothing, worrying is not going to help at all. Stay strong and sending lots of positive thoughts X

[BelAnna]

Thank you Emsie, Angst and Dragonfly!! I'm feeling a bit better this morning- I had dreadful weekend with anxiety! 

Thanks Emsie, you might be right and as Caramoole said I could be adding lots of unrelated things together and drawing silly conclusions! 

I do have shingles so my immune system isn't working at its best and I do definitely have some symptoms of IBC (peau d'orange, vascular congestion, non-healing red marks) but I'll see. 

I'm still torn over the MRI issue- IBC spreads so quickly that if it is that I want to get treatment asap. x

 

[Emsie]

Hi BelAnna, 

I’m so pleased you were feeling a bit better this morning and I hope that’s continued throughout the day. I hope you’ve been able to keep busy and keep your mind off things. 

Just to say, and I’m no expert, but I think shingles can occur for no obvious reason and I suspect also anxiety and stress can also cause the virus to reactivate, so it might not be anything to do with your immune system. 

Take care of yourself xxx

 

[Lynz]

1 hour ago, Emsie said:

Just to say, and I’m no expert, but I think shingles can occur for no obvious reason and I suspect also anxiety and stress can also cause the virus to reactivate, so it might not be anything to do with your immune system. 

You're right Emsie. My partner is only 31 and he's had shingles twice in the past 5 years. He's fit and healthy and there's nothing wrong with his immune system or anything like that. It's rare for someone so young to get shingles especially twice but it's just one of those things the GP says.