Masseur's comments have scared me.....

Public Archive
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I cannot recall a time when I haven’t had problems with my back, I’m 54, mainly Sciatica down my left side. To say I’m a martyr to my back, is really an understatement and I’m sure being on Tamoxifen is making my back worse, plus the fact that I’ve put on about two extra stone in weight.

I’ve paid umpteen amounts of money on Chiropractioners over the years and whilst it has helped to some degree, I’ve had to stop simply because of the cost.

In 1993, I suddenly started with a dizziness. Each time I turned over in bed, the room spun. It was mainly when I turned over onto my left side.
To cut a long story short, over the next three years, I went for umpteen test, from eyes, ears, xrays, …you name it, I had the test done and I was still getting the dizziness, which by now happened every time I bent over, turned my head to the left, I went dizzy and nearly passed out.

It wasn’t Meniere’s disease, that was discounted from day one.

The only thing they could find wrong with me was that I had a curvature of the spine, which they thought could be trapping a nerve in my neck.

In the end, I managed to get myself right, by simply taking paracetamol, relaxation, and a neck pillow.

Back to the Masseur’s comments, well, a friend of mine goes to see a lady Masseur and she is really quite cheap - price wise.
The thing is, last week, I turned over in bed and …bang…the dizziness hit me again.
Again, I’ve managed to get myself right, but I know for a fact that my neck and shoulder muscles are tighter than a drum skin, so I asked my friend about the Masseur.

The Masseur said she wouldn’t be able to do any massage until I have had permission from my doctor that it will be OK.
I asked why, her reply was that if the BC has spread into my bones, massaging will spread it further.

Now, I had DCIS - last year, June 2007 - which was caught at a very early stage. I had a Mastectomy of the left breast and 12 nodes taken which were all clear. I didn’t need radio or chemo.
After my Mastectomy, my BC nurse recommended me for complementary therapy which did actually include a shoulder massage, surely if it was a bad thing, she wouldn’t have recommended me…would she ?

Now, I’m absolutely bricking it thinking have I got cancer in my bones.

Am I getting myself into a state over nothing?

I would love to hear from anyone who is in a similar situation.

Thanks
Linda

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Hi Linda

You might find it a great help if you give our helpline a call to discuss these issues?

If you feel you can call them, you will find that you can in confidence about your fears and concerns and the team on the helpline are happy to talk to you or just be a listening ear if you feel you want to offload.

Breast Cancer Care are here to support you so please use us if it will help.

The helpline is open Monday to Friday 9am to 5pm and Saturdays 9am to 2pm. The number is free phone 0808 800 6000.

I am sure you will receive plenty of supportive, helpful posts from other users too.

Kind regards.

Louise
Facilitator

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Hi Linda,

You might well be getting yourself into a state for nothing - but the seed is sown now and I think you need to get a referral back to your hospital and get this eliminated (hopefully) from the possible cause of your problems. I would be quite blunt with your GP and tell him/her you have put up with this for long enough and need to get to the bottom of it and want to eliminate any possibility of metastatic disease first.

Your original dx was some years ago now and the bcn that recommended complimentary therapies back then might be a bit more reluctant to do so now with the pains you are getting. There seems to be quite an area of controversy around this sort of thing. Certainly any sort of deep massage for anyone with mets is a no-no I think. There are a number of threads about massage here with some very good advice on them that may be worth doing a search on.

If you do have cancer in your bones then you need to get on treatment before further damage is done. As you probably know I have been living with bone mets for over 6 years now. I hope your is not that but there is little point in treating your pain for anything else until you know. It takes a lot of courage to make that phone call Linda but the worry won’t go away. It’s the sad thing about this wretched disease that we do need to be watchful.

love Dawn
xxx

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Thanks Dawn.

It was only actually last year - 2007 - that I was dx with DCIS and had my Mastectomy, but I’ve had problems with my back for as long as I can remember and the first time I started with the dizziness - to which I had all the test imaginable done - was in 1993.

I will be having a word with my GP though.

Thanks
Linda xx

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Sorry Linda, that will teach me to read more carefully :). That does seem to suggest the problem is not bc related. But you would think someone has the answer to why you are suffering like this. It still seems to me that if you are worried about it being in your bones it would be a good time to get someone checking it out for you. An MRI scan may well hold the answer - have you had one?

Dawn

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Hi Linda

I think the masseur’s comments were simply relaying what she learned at college about cancer in bones -you didnt say whether you actually saw her or not. If it was just a throwaway comment, I would not pay any heed to it whatsoever. It is highly unlikely that your backache is caused by mets because you would be in a dreadful state by now if it had been going on for 15 years or so and DCIS is unlikely to have turned into an invasive cancer with mets so soon? I know common sense probably tells you all this anyway, but when you are in the position, you are so susceptible to comments and read into things that simply are not true. I remember when my son was recovering from cancer - I had been told by the onc that he had an extremely good chance (which he has because that was 14 years ago) yet I would still get worried when someone who really didnt know what they were talking about would say something like your masseur did. I used to panic and dwell on it and think what if they are right. I really would be guided by what your surgeon has told you and stick to that and that alone. They have all the factsabout you infront of them and one thing is for sure - if they had any doubt about you having anything other than an excellent prognosis they would have told you straight. They also surely would have recommended adjuvant treatment such as chemo is yours was aggressive, so I would really stop panicking. Speak to your BC nurse on Monday - ask her to go over the pathology report with you again, put your mind at rest and stop letting people who dont really know worry you. I too have just had surgery for DCIS and need radiotherapy. I have been told that I have an excellent prognosis, but when I am sure that many people are already righting me off, simply because they here the word cancer and throw us all into the same boat. My mother in law keeps looking at me with great pity and touching me saying are you all right dear and when I told a friend yesterday who I hadnt seen for ages, she said Oh my god, what are you going to do about the boys? I felt really good after that!!!

All the best

Cathy
x

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Linda, I remembered seeing this on Cancer Research website. It is a research paper about how women overestimate the risk of DCIS -you might find it useful?

Cathy
x

info.cancerresearchuk.org/news/archive/newsarchive/2008/february/18467683

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Dizziness is a tiresome complaint - I have a tendency to having it, and generally it has been linked to sinus and ear problems, combined with migraine. I was helped by a Bowen treatment, which is a form of physiotherapy using non-aggressive pressure techniques. It is important to find a Bowen therapist who is also a registered physiotherapist, but it can be remarkably effective.

If you are concerned about bone cancer, then you would be wise to have it checked out - simply to put your mind at rest.

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Hiya Linda,

Im sorry that I dont have any advice regarding your fears about cancer spreading to your bones.
I just want to try pt your mind at ease regarding the dizziness you have been experiencing.

I too have had dizziness for the past 2 1/2 years, always brought on from the left side.
If I turn my head to the left, turn over in bed on my left side, if I tilt my head back…etc.
I was told I had labrynthitis, an inner ear imbalance, inner ear infection.blah blah blah.

In Dec I was worried that I had brain mets as I felt that something was not right with me always having this dizzy problem so I went to see my GP. He said that I had BPV which is Benign Positional Vertigo and did not in any way think that I had brain mets, but to ease my mind sent me for a brain MRI scan.
The results came back clear thankfully!

As you seem to suffer with the same syptoms as myself it sounds like yours too could be BPV.

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Hello CATHY your link was really positive, i ahve days when its all gloom so ill keep that in mind, also i have had problems with my ears for many years and i cant tell you all how ill and the many strange side effects they can cause, or how long ear infections can hang around for!!!

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Hi Linda

Sorry about your dizzy problems I only suffer occasionally and understand how awful it can be. Hope it gets sorted.

I too have had DCIS and had mastectomy with 14 lymph nodes removed (all clear) with immed recon last Sept. I was told by my lymphodema specialist who does massage to prevent lymphodema for me, the reason it is not adviseable for me to have a ‘normal’ massage on my back, neck and shoulders is that the masseur in a beauticians may massage down my arm therefore effecting the drainage of the lymph system. I am also aware that people diagnosed with invasive cancer may have to be aware of massages for other reasons.

I have had a facial though but even then I ensure that the masseur understood to only massage up towards my face when she touched my chest and shoulder area.

Hope you find someone to discuss it though with because I think it is a very important area. I am hoping that one day I will be able to have a lovely back massage but at the moment I am resigned to the fact I can’t.

Good Luck

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Hi there
My husband is a sports therapist and uses massage. If when he first sees someone they say for instance they have severe backache, he always tells them to get it checked out with the GP first and get an xray. He obviously cannot give a full diagnosis and has to cover himself.
I am a bit shocked at what the therapist said to you and find this a bit unusual. I would think they are mainly covering them self and have little medical knowledge.
With best wishes
Alison x

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Hi LindaH,

I agree with Alison.

Masseurs are not medics and shouldn’t pretend to have medical knowledge. I don’t mind them erring on the side of caution where medical conditions are concerned but I do object to your masseur frightening you with unsubstantiated statements about massage spreading BC.

Give the woman a wide berth in future.

Best wishes,

Sue

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I agree with Sue about masseurs and some complimentary therapists, for that matter. I went for reflexology which was lovely but was discussing my forthcoming radiotherapy. The therapist went on about how these harmful rays damage the body and using other techniques to boost the immune system could help. I pointed out that yes the rays may be harmful, but the cancer cells if left to their own devices, would be much more of a threat. I really don’t know if she understands the concept of malignancy adn why radiotherapy is necessary. If I hadn’t been so clued up about my medical treatment and know what I am doing and why I am doing it, she could have scared me silly.

Cathy

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Cathy, you have summed everything up in a nutshell, thank you.

Bless you Dawn, thank you.

Julie, that is exactly how I am. I seem to be able to get it back under control myself, by really just relaxation and pain killers, - but I’m so glad, and I don’t mean this is a bad way - it’s good to know I’m not alone with this, because at one stage my GP sent me to see a psychiatrist, thank God the psychiatrist knew it wasn’t all in my head.

Julie, can I ask, what do you take / do for your dizziness ?

Thank you everyone I am so grateful for your help.

Linda xx