Hello All
I have a niggle that just won’t go away and was hoping for some advice.
I was diagnosed at the back end of July, lumpectomy and SNB on 28th Aug. Results were 29mm, grade 2, IDC, 0/3 nodes, evidence (?) of lymphovascular invasion. I have had my 1st FEC 10 days ago and I’m feeling pretty good after a few rough days.
My worry is… I have had a painful upper arm for months (long before I found my lump) and I had been ignoring it as just soft tissue damage that would repair itself eventually. I had “tennis elbow” some years ago and it took about 4 months to get better.
I mentioned my arm pain to the MacMillan nurse when I was first diagnosed and she said it was probably a frozen shoulder. Off I went to see my GP who seemed to agree that it is early stage frozen shoulder. I have also mentioned it again to the MacMillan nurse at the hospital as I was worried about the cancer having spread to my arm bone… she said that it won’t have done because my nodes were clear.
My blood tests just before my 1st chemo were at the low end of normal across the board.
I have not mentioned my arm pain to my oncologist but I am seeing him before my next dose. What do you think? Am I worrying unnecessarily? Should I mention it to my oncologist when I see him?
Any help/advice would be really super
Thank you
Sue
It sounds like you’re having a worrying time at the moment. I’m sure the users of this site will be along to support you soon.
In the meantime maybe you would like to talk things through with a member of our helpline staff. Here you can share your concerns with somone who will offer you emotional support as well as practical information. The free phone number is 0808 800 6000 and the lines are open Monday to Friday 9.00 to 5.00 and Saturday 10.00 to 2.00.
it probably isn’t anything I think we all attribute every ache and pain, at some poin, to cancer progressing and it will be a worry for you. Whilst the nurses has dismissed it, if you are still worrying you should mention it to your Onc when you see them next - he/she will ask loads of questions re pain site and type of pain etc and if they feel the need will get you a scan which will let them see whats going on. the help line here is magnificent too so its worth ringing them too. I am sure its nothing but if you get a clear scan then at least it will put your mind at rest and stop the nagging worry that keeps you awake at night x
Thank you Sam and saffronseed,
I feel a bit more relaxed just having offloaded my worries about it. My husband has been brilliant but I can’t worry him about every little niggle I have. Luckily it’s not too long until I see my oncologist again and so I will talk to him.
It is just a niggle in my head but I need to be reassured… I thought my lump was just a cyst or lumpy booby due to the onset of the menopause and look what that turned out to be.
Overall I am very upbeat as everything is so very positive. Sue x
Hi Suz
I have had pain in my shoulder since dx.I do have exstensive bone mets but the shoulder pain has been ruled out as being caused by mets,as has the pain in my right hip.What i am really trying to say is that it is understandable to put every pain down to cancer,where as pre bc we would just call it an ache and pain.Do mention it to your onc and I am sure if he thinks it is something will do further investigations.I hope everything turns out to be nothing more than a frozen shoulder.
Haya, Please don’t just take the standard " oh it’s probably…" from your BC or Macmillan nurse. They are not the decision makers in your treatment plan. You MUST speak to your oncologist about your fears. I had NO vascular invasion, NO node involovement and Tumour Markers of about 13 ( very low) but a bone scan showed up a tumour in my hip bone. I felt no pain and had just run a 1/2 marathon, pounding the streets every night!
However A bone scan can also show up lots of other things, like… an old fracture which I have no recollection of having plus arthritis in my shoulder which I,again, had no idea about. Of course now I know I have them it hurts!!!
Having said all this what you probably don’t have is secondaries, ther odds are in your favour. It is getting colder and raining constantly, everything seams to ache a bit more, we aren’t getting any younger, and of course we are more in tune to our body’s strange little quirks now. Please try to relax and reasure yourself it is UNLIKELY that you have secondaries. But- on your next Onc appt please talk to him/her about how you feel and that you want them to investigate further and for you not to be fobbed off.
Pm me if you wish, usually sround… love and hugs, Horsie xx
I saw my oncologist yesterday just before my 2nd chemo. He was very sympathetic but said at the moment if my arm/shoulder pain was anything nasty my treatment would be the same for the time being.
What he did say was that when my chemo has finished if I am still feeling pain or am worried at all they will do an x-ray at least.
I have to say this has eased my worries as it is not being dismissed so I am going to concentrate on getting through my chemo for the next couple of months.
Thank you for your advice… it certainly does help to talk … to you and the doctors!
Glad you’re feeling a bit easier now. Maybe I can help a bit more. My Pain Man - palliative care properly - went thru my bone scan in detail with me and there’s a hot spot on one of my arms. He said this was unlikely to be anything to worry about as arms are not often affected - which is probably why your onc is so ‘laid back’ about it.
Nina
hi just to ask a wee question i dont like phoning my bn feel like she treats me like im wasting her time i had a wle in aug had grade 2 stage 2 idc nodes clear but before finding the lump in my breast i had a small pea sized lump under the skin at the top of my thigh now its a kind of oblong lump if that makes sense am i just being paranoid cause i thought the surgen said it could only spread through the nodes and they where clear id just be grealy gratefull for any advice thanks xx
