Inflammatory breast cancer fears

Hi everyone I was hoping for some advice.

I am 29 and have been having problems with my breasts for 4 or more years. They have been very painful and leaked fluid. I have never had a baby. None of the GPs I have seen have ever been very interested. Just told me breast pain is normal on the pill and with fibromyalgia (which I am diagnosed with).
 

over the last 6 months I have been talking to the GP more about my breasts, particularly the left one as it has been really painful and just has not been feeling right. I had an exam with the GP's hands and a blood test and was told that all is fine but my hormone levels are slightly raised (which is to be expected with the combined pill).

In April my nipple suddenly inverted and my breast became incredibly painful. There was a large painful lump present around the nipple area and a change in the discharge. 
 

I was sent for a breast scan and given antibiotics. Anti biotics helped with the pain quite a bit but the lump was still there. 
 

when I saw the consultant I again found him very uninterested in talking about my general breast health. He diagnosed me with periductal mastitis and sent me for an ultrasound scan. When I saw the female consultant and technician for my scan they asked how long ago I had had my baby. I told them that I had not had one. They told me it was important to ask my main consultant to think more about why this might be happening to my breast, especially with symptoms having been going on for a long time. She also told me that the fluid inside my breast looked thickened, and she did not want to attempt to aspirate as it would only hurt and was unlikely to ease my symptoms much.
 

when I went back upstairs to speak to the consultant he made me feel quite stupid for asking why he thought my breasts were lactating. He kind of shrugged me off and said something similar to "because they are breasts". I have to admit I didn't push much more after that.

when I had my follow up I had finished my antibiotics and the swelling was much smaller although there was still a hard painful lump in my breast, nipple inversion, crusty yellow discharge and a small amount of dumpling above the nipple.
 

he decided to go ahead an aspirate despite what the female consultant had said. It was incredibly painful and all that he managed to take out of my breast was blood which he discarded (confirmed in his write up). He told me that I would be kept on the books and that I could call in to come back at any time. 
 

I waited for about 6 weeks to see if it would heal up, but it did not. It was more swollen and bruised after the aspiration. It suddenly swelled up again and became incredibly red, painful, with this strange dimpling along the breast like orange peel, a greenish bruise colour along the bottom of my breast and my nipple still lays completely flat against my breast. I also have a sore swollen lump under my armpit.

I called the team to try and get an appointment, only to be told that all patients are discharged after 4 weeks so I would have to get re-referred.

I have managed to get referred back in but i was told that because I have been diagnosed with mastitis it would be a 3 week wait to see a doctor. I explained that I had new symptoms and was told that these sound normal for mastitis. 
 

I am really concerned about my breast. It is just not right. I don't feel like any of the doctors are taking it seriously. I had to beg and call for days to get some pain killers (paracetamol and ibuprofen don't work for me, I believe because I also have Ehlers Danlos syndrome). 
 

I have read up a bit more about about what the consultant is meant to do with bloody fluid drained from the breast and all of the sources I can find say that it is mean to be sent off for further analysis as it may indicate cancer. 
 

I am really concerned that I am not being taken seriously. I feel very helpless and am struggling with depression and suicidal feelings. The GP is too busy to see me, they just text me telling me to wait and see what a fresh lot of antibiotics does for me. I am also diagnosed bipolar and recently came off of my meds because I was doing well managing my moods. I honestly feel like this is pushing me over the edge. 
 

I think that I probably have no other option but to wait to be seen by the consultant. I am worried about what all of this time waiting will mean for my health. I am just very scared to be honest and feeling very tired with new pain raidiating into the back of my shoulder.
 

if you have any advice or just any words at all really I would be very grateful.

  • Hello Kera 321 and thanks for posting, 

    I am sorry to learn about your ongoing symptoms and that you are concerned that the doctors aren't taking them seriously. Because of the stress this is causing I do urge you to speak to your GP or mental health team (if you have one) as soon as you can about your mental health and let them know you are struggling. with your moods and these suicidal feelings.  It may be that they would want to consider restarting antidepressants or arrange some other support. Do be sure to contact the surgery about this specific issue and tell the receptionist about this when you call for an appointment.  

    I'm afraid we can't assess anyone's symptoms, but I am aware that inflammatory breast breast cancer is rare and so is any type of  breast cancer in your age group so just from what the statistics tell us, it isn't a likely diagnosis in your case. More often in inflammatory breast cancer a tumour, that is a breast lump, can't be felt, but in periductal mastitis it is common to feel a lump behind the nipple which can turn in. Also it sounds like at one point the antibiotics were helping and I think it is doubtfull that this would happen in inflammatory breast cancer. I expect you have already seen it, but if not, another UK charity Breast Cancer Now has more information about periductal mastitis which you are see at this link. 

    I appreciate that it can be hard not to worry when symptoms don't clear up and I am pleased that you have another appointment arranged at the breast clinic to be reviewed , I hope you have the opportunity to ask the questions you need answers to. It sounds simple, but it can help to write things down so you don't forget. I am sorry that the consultant wasn't very sympathetic last time and hope things go better at your next appointment. 

    Unfortunately, in the NHS, some waiting is inevitable and can be challenging when you are worried. I am not sure what you can do other than ask for a cancellation if one becomes available. NHS breast clinics try and see people within 2 weeks, an extra week isn't so much longer, but it is frustrating that no one told you that you would be discharged after 4 weeks. It sounds like your GP might have given you some more antibiotics to try, if so and there is no improvement all I can suggest is that you talk to them again.  

    I think having tests and investigations can understandably leave a lot of people feel vulnerable and helpless,  try to look at it from another angle- you are in the system and will be seen quite soon. Hopefully nothing as serious as cancer is going on and things will be sorted out over time.  

    As I said at the beginning do contact your GP today about your mood and suicidal feelings.

    You are welcome to give us a call if you want to have a talk. Our number is Freephone 0808 800 4040 and we are here weekdays 9-5.

    You can also call the charity MIND, see here for their contact details and the Samaritans on 116 123.

    With best wishes, 

    Julia