Hi everyone, I have just joined this site. My names nicki. It's kinda a relief to have finally found a condition that is matching my symptoms. As I write this I am quite poorly. I was diagnosed with breast cancer invasive ductal IDC stage 2 three days before Christmas. I came across a lump in the shower. I went straight to the doctors and was reffered to Barts NHS hospital for tests. Here it was confirmed on my first visit I had breast cancer.
The last four years have been the roughest. I had been diagnosed with oeostioathritiis in my 30s. I have suffered terrible neck and joint pain for years. Also lots of wear and tear on the neck. I was l also very depressed as my beautiful mum was diagnosed with frontel lobe dementia at 59. I was her main carer and she came to live with me for a while. Mum's condition rapidly progressed. I also started suffer with back spasms. I had to lift my mum alot and it weakened my back. Also I had server burn out and very little help. So with great reluctant had to put my mum into a home which in some ways broke my heart. I lost my mum in august 2016 four months ago.
Mum went into palative care in may. I nursed her every day and wouldn't leave her side. She wasn't local so I had to travel on trains to get there. I was noticing this awful fatigue and general aches and pains, also server night sweats. I put this down to depression stress and losing my mum.
After my mum's funeral I was desperately tired and feeling awful. I kept going to my GP. They reassured me it was grief. I agreed as that would make perfect sense under the circumstances. However these symptoms got really bad. I had awful lower back pain, neck pain and headaches. Night sweats became worse. Blurred vision, swollen lumps in hands and feet, veins where painful is I knocked myself slightly. Server shooting pains over my body. I was also tired exhausted and weak. Groin pain and swelling. Blood shot eyes and sore redness around the rims. Red flaky dry patches over my body.
Now I've found out I have breast cancer so they are putting my symptoms down to that. But I really believe it is vasculitis.. Is it true that cancer can cause this? I am going for all my scans in the next week and hopefully starting chemo for 8 months. Will this not make the vasculitis worse? I would really like any help on this. I am seeing my oncologist on thr 12th. So sorry this had been long message. I am just hoping for any advice. Thanks nicki x
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nickijay71
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So sorry to read your post, it might be better if you contact the helpline and speak to someone one to one as directly as your story is complicated. You can do this either my phone or email. This is the link with the details. vasculitis.org.uk/helpline
Thank you for that good advice. I am still not getting anywhere with my GP, Oncologist, specialist nurse, hospital. Although I have been reffered to a rheumatologist but they can't see me till the end of March!
Thanks for replying, someone caring enough to get back to me helps me loads all the best to you too. 😊
Hi Nicki. I'm a Male so not able to comment on the connection of breast cancer and vasculitis, however, your symptoms sound very similar to those I experienced. I was diagnosed with microscopic polyangiitis some 10 years ago. I suggest that you insist on seeing a rheumatologist as soon as possible . Good luck with it all. Nick ( Australia)
Hi thanks so much. When I've been putting my symptoms into Google, the illness you have actually comes up with also vasculitis and Lyme disease. I finally got the doctor to refer me to rheumatologist. However they can't see me till end of march. My symptoms have become worst yet the doctor has said they can't press for an earlier appointment! I feel so let down by all these people around me. It feels like there isn't any ergancy! Not unless your dieing at there feet. I must have chosen the worst time to get sick as the NHS is at breaking point. There have been people dieing in there corridors as they aren't being seen to quick enough as there are so many people they are not coping..its awful going to my doctors and hospitals as the waiting rooms are like 3rd world countries. You can see they ARE NOT COPING. This is so worrying when you feel so unwell. Thanks so much for replying to me. Did the rheumatologist send you on special blood tests? Where they quick to diagnose you? I hope you don't mind me asking?
Hi Nicki..I am so sorry that you have had such a difficult time, and my heart truly goes out to you. I am sad for your loss as I understand how painful it is. I hope you have found a grief counsellor or have got good support.
Amazingly we just push on at these times despite our illness', but It is a huge strain both physically and mentally, affecting our overall health.It isn't until afterwards that we feel the weakness in ourselves and take notice of the physical pain in our bodies..
It is good that you found the lump and can now get the treatment.I sincerely wish you all the very best of health with it..
I don't have an official diagnosis of vasculitis.But like you I have suffered symptoms for a long time and had to do my own research..A rheumatologist recently said I have Hypermobility which is a cause of my many painful symptoms and illness, and she also suggested vasculitis, but no other help was offered..I also have fibromyalgia..
I am told a vasculitis diagnosis is difficult when you have other conditions as the symptoms overlap..
I have had great support and advice on here and also directly from the helpline, and because of it I now know to see a particular vasculitis specialist who I intend to get referred to soon.Hopefully any vasculitis condition will then be diagnosed.
I really do wish you all the very best Nicki.I know you have a lot to deal with but you will get through it..Helplines-phone and internet- and talking have been a massive support to me and I have found it easy to face..Sending my love to you xx If you want to get InTouch please do, or just let us know how you're doing x
Hi everyone thank you all so much for getting back to me. Even an acknowledgement has helped. I feel so alone. I have hardly any help/support and I feel very low in my mood.
I feel I'm not being heard and doctors etc just won't listen and keep saying it's anxiety but it's not. Even though I'm low these pains are very physical. I'm going to call my GP again to see if they will listen to me. I am very sick and so weak I can't make it to my scan today.
Hey ah so sorry your going through all of this I totally understand how you feel. Yes you DO NEED A MAMMOGRAM. I feel for some reason you have to really push these doctors to listen to your concerns!
Please let me know how you get on. If you need a chat please email me. I understand how you feel totally
Sending you a big hug 😊
Hi Nicki,
So sorry to hear about you mother and your awful symptoms over the years. Please do phone or e mail myself or John on the helpline and we can talk things over. There are over 18 different variants of Vasculitis and they have many mimics including other auto immune/ auto inflamatory disease. One of the mimics is paraneoplastic syndrome which can cause symptoms similar to the ones you are having.
I am not sure that there is evidence that cancer causes Vasculitis although the treatment for it can cause an increased incidence of some forms of cancer. The cornerstone of Vasculitis treatment is immunosupression specifically chemotherapy but in a lower dose that is used to treat cancer so chemo won't make things worse.
You need to have a full and frank discussion with your Oncologist, get then to document your questions and concerns and their answers to them. Ask for evidence to back up their opinion but listen to what they have to say. If they don't take you and your concerns seriously then I would question whether they are the right Consultant for you.
Thanks so much for this valuable advice. After reading the link you sent me a few things have brought up other relevant stuff. I've had osteoarthritis since I was 30. It had gotten worse over the years..especially in my neck area/spine and hips. My neck on the left has differently got alot of wear and tear. I feel like I also have a trapped nerve in there and thr pain is excruciating. I can no longer turn my head to the left. I have suffered with headaches also. For over 6 years going to my doctors I've had nothing but pain killers thrown at me. I was sent for an MRI scan of my neck. I went in to see my doctor and he was so vague about the results saying it was wear and tear. It seems for them it was case closed. It didn't matter I was still suffering with this awful pain. I now have weak spine and suffer with regular lower back spasms. Still no ergancy with these people!
It was so so difficult caring for my mum with this pain. Yet I couldn't..wouldn't let go until the decision was taken out of my hands.
My knees and elbows are also in pain from this arthritis. I have scriosist. This is mostly on my joints. I became I'll with the other symptoms long before my cancer diagnosis. All my bloods and scans which have been done over the last two weeks have come back all clear? They have said at the doctors that all my bloods are not showing inflammation changes?? I just can't work this out because I'm swollen in my neck, under arms, groin, hands, face, feet?? Also my veins have now been popping out around my wrist area and they are very painful. My knee is painful and my calf muscles. My elbows too? Still having night sweats. Still very exhausted and fatigued and pain is still random in my body. I'm sure they don't believe me. They are saying I start my chemo this week so I need to convert rate on the cancer?? Once I see the rheumatologist in march we can deal with my other symptoms then. The thing is today I felt nausea, dizzy, tight chest and breathless thought I was going to pass out. I'm now scared to keep going back and complaining. Although I'm sure I need to see a rheumatologist but I can't be seen to march and there is nothing they can do about bringing this forward??
I'll give you a call. Many thanks for relying to my original message. I feel like no one is listening to me.
Nicki Im in tears reading your post, because I lost my pregnant 25 years young daughter to Stage 4 widespread breast cancer and I have all your symptoms and others..... I was her caregiver and beyond exhausted. Quoting the US NATIONAL LIBRARY OF MEDICINE: "The vasculitides encompass a rare subset of autoimmune diseases. Reports of the concurrent association of malignancies with some forms of vasculitis raise the possibility that patients with certain types of vasculitis may be at increased risk of cancer." I have pain deep in my hip/pelvic cavity, and I have an area on my side just below the armpit, rib cage that I jump through the roof if any type of pressure applied. Most of my body is sensitive to pressure applied by touch but this pain is deep, sore and makes me go through the roof. I have doctors appointment on Jan 17th and I am hoping for the best preparing for the worse and a possible hospital stay, that is how sick I am. I was told to go to the Emergency Room but I refuse they do nothing. The last time I went (about 7 weeks ago) they could not get IV started, fussed about giving me an xray and sent me home with a script for Lyrica and told me go see your doctor. I'm praying for you. Sending you Love and healing thoughts.
Hi awww I'm so so sorry for your loss. I can't begin to imagine losing your young daughter must feel like I also can't believe you have been through so much.you like me sound like your in so much pain. I am slowly losing my faith in hospitals and doctors. None of them are taking my symptoms seriously. Whilst they get worse and I get more scared! They seem to think I am imagining them! They have sent me to rheumatologist but the nearest appointment is end of march! I am so scared.
I really hope you get everything answered for you on thr 17th. Please please let me know how you get on. I too suffered exhaustion and completely rum down as my mum's carer. I was so tired. I believe all this didn't help my own health. But it was thr worry of seeing my mum suffer that made me I'll the most. We where totally alone and once again let down massively by NHS and doctors care homes nurses social workers. We live in a pretty bad care system. I swore I never wanted to set foot into a hospital again but here I am back there for myself. The irony of it..god is certainly playing a joke on me! Although they also say god only gives you what you can handle?
I'm sending you All the well wishes in the world! Lots of love 😊
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