What should I worry about?

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Silly question probably as it can be anything but can any of you ladies, particularly those with local recurrances or secondaries tell me but what should you worry about?

My LD recon has developed a dent around the drain site and further around that is a harder lump about the size of a pea. I get odd sensations in my upper arm and odd stabbing pains in my boob. My tumour was just under the nipple.

Is it just my recon settling down (I had a skin sparing mx with LD recon and a 18mm tumour, grade 1 and 1/9 lymph nodes with micro metastases and ER and PR positive, I am currently facing my 4th FEC on Tuesday) or should I be concerned?

I have never mentioned it to my Onc or breast surgeon, but, for the same amount of time that I had my fibrodoenema (strangely in the identical place to where my BC was found to be 3 and a half years later) I have on and off had severe pain in my rib vertically under my breast.

I had the pain treated as and when it initially occurred (3 and a half years ago) and due to nothing else showing on x-rays and scan it was dx as musucular skeletal pain (with nothing sinister showing, to my knowledge). In a separate presentation, around the same time or within 6 months, I presented with a lump in my left breast it was dx as a fibrodonema and found to be grade 2 so nothing apparently to worry about (!).

The pain still recurs and has done over the past 3 years but not in a predictable pattern and it can be weeks between but can completely debilitate me should it catch me unawares in the bath or bed, leaving me unable to breath or move.

I also don’t know who to mention this to (the pains in my boob and/or chest).

Should I tell the breast surgeon when I see him on 7th Jan or my Onc when I see him on 30th Dec? Will they know from my notes about my previous chest pain?

(Onc has never examined my breast before dx or since just asks me how I am or what I want and then prescribes something so how do I know he won’t just send me somewhere else - ie to see the boob doc I saw initially to dx my BC?

More importantly, especially to those with secondaries or local recurrance in clavical nodes (as they are not removed during clearance) or other nodes - when am I being paranoid?

Please help, O, x

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PS, can you have local recurrance etc whilst still being on chemo for primary BC?

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Hi Ostrich

Sorry to hear you’re suffering with this. Can I suggest that you give the helpline a ring on Monday and have a chat with one of the breast care nurses here and see how they can support you with this. The lines open at 9am til 5pm Mon to Fri and Sat 9am to 2pm, calls are free, 0808 800 6000.

Hope this will help. Kind regards,
Jo, Facilitator

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Hi Ostrich
I know how worrying any ache or pain can be particularly where the original op was. I suggest you mention anything you’re worried about to your onc on 30th Dec. Even if he’s never examined you before he might now or if not (as they all work as a team) he should mention any concerns to your surgeon who you will see the week after. My onc and surgeon always ‘had a feel’ on my 6 monthly follow up appointments so there’s no reason why your onc shouldn’t if he feels it necessary. As you are currently on chemo I guess your onc is dealing with that side of things more than the following up of the operation. I would think it very unlikely that you have a regional recurrence whilst still on chemo but your onc would be the right person to ask, I’m sure he will be able to reassure you.
I hope you get your worries (which are perfectly understandable) sorted asap. Take care
Nicky x

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Hi Ostrich, I would say always mention any worries to the team, the need to know it all so they can make sure everything is going according to plan.

I hope your appt went well and they managed to put your mind at rest, thinking of you.

Nikki

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Hi Nicky and Nikki,

Thanks for your thoughts. I mentioned the lump to the Onc who felt it and said “its definiately not cancer related but doesn’t feel normal, I should mention it to your surgeon on the 7th”. How helpful is that? My Onc is at my local hospital and my surgeon is at a hospital 20 miles away so I think they only correspond by mail and then none too accurately (I was reading the letter from my surgeon to my onc in my file when he stepped out of the room and noticed in it it said I attended with my partner and we have a 10 year old son - I am married with 3 kids, 2 more or less away from home and a 10 year old daughter!)

I’m back off to see my surgeon on Weds next week so they can look at my back wound (15 weeks’ post surgery!) so I will mention it then. My entire LD is strange and looks oddly shaped and coloured and dented at times over 3 months on so this lump could have been there all the time. I’m sure I’ll just get the “be patient” stuff. I just don’t feel it will ever be a real boob - perhaps to look at eventually but never to touch - it still feels like I am pulling under my arm and in my back when I touch it there and at the dent and lump site. The pics look good when you see recons but the time factor/feeling factors etc are never really explained.

*Sigh*

Thanks again for your advice. You do find yourself thinking its better left alone cos being told “I don’t know, its probably x or y but nothing to worry about or it takes time, thats why you are called a patient” to anything you might find isn’t reassuring. I have been told anyone of these about that lump, my brown spots which have appeared all over my hands and feet, my “mild and will disappear lymphodema” in my breast.

Don’t you just love BC?