I feel like I can’t move on and just seem stuck in a loop. I had high grade DCIS 18 months ago. I had lumpectomy and 5 sessions radiotherapy.
I wonder if others feel they use the breast clinic too much. I’m asking for another appointment 3 months after the last one. I don’t seem to ever be able to look at my breast without seeing another problem. Last night I raised my arm and right on the scar there is a pulling in. I have the lumpiness above the scar which I hate but am used to. But I don’t believe I ever noticed this pulling in on the scar before.
I hate the thought of yet another appointment but I need this checked out. In 18 months since diagnosis this will be my 4th visit. Will I still be taken seriously or just seen as neurotic? Tell me I’m not the only one, please!
If you are worried you should keep on going back whenever you feel the need and getting checked out .Dont worry what anyone thinks, it’s your body, your worry ,your right to be taken seriously. .Most of the time these things will turn out to be nothing to worry about but you should take anything a bit out of the ordinary seriously and so should the breast clinic ,once you’ve had breast cancer you need that re-assurance that things are ok if you feel uneasy .
@charlie55 I have had 4 breast clinic visits, 3 phone calls to the breast care nurses, and a bone scan in the last 9 months due to breast changes - firmness, orange peel skin, fullness, and sternum and rib soreness. All due to post radiotherapy changes. I now accept that and accept that the breast will never look or feel like it did before. It took me a while to get to that acceptance.
The Breast care nurses and surgeon were all lovely and patient and kept saying just ring us if you’re worried. They’re used to it and expect it. Do whatever you feel you need to reassure yourself.
You’re doing absolutely the right thing to go back. The breast care team would rather that than have you ignore it. Here’s hoping there’s nothing to worry about and that they can put your mind at rest. Good luck. x
Since my initial diagnosis 9 months ago, I have had an additional four areas of concern checked out. Two were cysts, the third we don’t know what it is but the biopsy results came back benign and it’s remained stable, but I’m afraid one of them did turn out to be an early local recurrence of the cancer under my lumpectomy scar.
Whether you’ll be taken seriously or seen as neurotic isn’t something you can control unfortunately and I know it can be hard because some healthcare professionals can have this attitude towards patients. Luckily I’ve never experienced this in my breast clinic, but definitely have elsewhere. I would recommend you try to move this down on your list of things to worry about though because your health is more important that what people think and I have personally found that since my cancer diagnosis, most are more understanding of the patient’s need to get anything and everything checked out. It seems to be a lot easier to get a GP appointment too!
Hope you manage to get an appointment soon and it turns out to be nothing. x
Up and down, which is probably the one consistent thing about everyone’s cancer journey! Final dose of chemo is in 4 weeks and I cannot wait. Thanks so much for asking. x
I’m in your gang, and it has been driving me crazy! I’m now waiting on my 3rd visit (2WW) in 10 months.
I get large cysts but been told I must go back every time as there’s no way to check it’s a cyst unless I go it and am scanned (US). That’s the same for most changes apparently.
This time I’m having spontaneous intermittent clear nipple fluid as well as new cyst, I’ve never had it before even with my last DCIS (10 months ago) , so I’m a bit concerned about that but I just wish things would do nothing at least for a period of time, I hate ringing and feel bad when I know I shouldn’t .
Hi Charlie 55, from one neurotic to another, keep asking, it’s the only way (to my way of thinking), that you can get peace of mind! Sending gentle hugs. Dianne
After what to have been through , the breast clinic are there to advise and support you whenever and for whatever you need it. I am 10 years down the line post lumpectomy, total axillary clearance as it had metastasised and 15 days of radiotherapy. I have still a sunken scar which has small lumps right along it and it is sore! Not a pain as such but tender as if boiled water has been poured over it. My GP told me a few months post operatively that a lot of women once recovered physically from the operation and subsequent treatment, the breast clinic although always there to help basically leave you to your ow devices so I always found it difficult to approach them if I was concerned about anything. I should have been more forthright and contacted them whenever I need to. I am still struggling with several issues related to the cancer so please contact them whenever you need to so they can help you WHEN you need it. Sending love
Thank you so much. I hope you get the help you need also. A good gp is invaluable.
It’s such a lonely place to be and I find myself spending most of my waking time thinking and worrying about cancer. I don’t have any close friends, the one I did have has abandoned me, the rest are just work friends or occasional coffee friends but none I can really sit and have a heart to heart with.
This forum has been the closest to friends I’ve had since this all began.
I’m not trying to sound ‘pity me’ I’m just a bit angry.
I’m in the same boat with regards to support. Aside from the forum, I do have my mum and sister, who I’m very thankful for, but I can’t really talk freely with them about I feel about the cancer as they just really want me to be ok and can have a hard time with any negative feelings. Luckily I do have an amazing counsellor who has also previously had breast cancer and genuinely gets it so I do at least have her to talk to and I’m looking at joining a local support group when I can find a date that isn’t impacted by chemo!
Have you received any counselling or tried any support groups etc.?
I understand what you mean about not wanting to bring people down with negative thoughts. I have 2 sisters but only one I could rely on and she tends to try to ‘fix’ my problems instead of just listening. I feel because mine was DCIS it’s not seen as ‘real’ breast cancer.
I got counselling and it was good but hasn’t really helped much in the long term.
I just feel so alone.
Thank you for reaching out to me. Please feel free to message anytime if you need a chat or just to offload.
I had the same as you back in 2022. Since then I had my regular mammogram in 2025 only to learn that at my scar sight I had a tumour. Triple negative breast cancer. I’m not saying this to scare you I’m saying it to inform you and to let you know that you’re not neurotic!
I am now post chemo and post surgery and am presently finishing off my treatment with tablet form chemo and a couple of other meds. Get yourself checked out and don’t feel bad about it! This is your life and if you don’t get checked and it turns out to be something major you’ve blown it!
If it’s been 6 months since
Your last mammogram you can have another one! ASK for it.
Take care and I wish you all the best of luck I now have my prosthetic boob and am proud of it xx
I’m 18 months post lumpectomy + radiotherapy, and 9 months post seroma closure. I’ve lost count of my visits to the BS and have another one on Wednesday. I still have lots of post-radiotherapy discomfort which, at times, is so painful that I can’t sleep on that side! I’m not specifically worried about a recurrence, I just need to know that what I’m experiencing is normal. Fortunately, I don’t have any issues getting an appointment. You are not neurotic - we are entitled to ask for reassurance as and when we need it in the first few years while post-radiotherapy changes are still happening. Take care. Mx
I now have my prosthetic boob and am proud of it xx