Hi Ann
Yes, I absolutely agree - we cannot help the way we are. Some of us cope better by not knowing - others, like ourselves, are different in that we cannot cope with the “not knowing”. I too wish I could walk around in blissful ignorance - but alas it is not so.
I am a registered nurse of 28 years, and more recently a registered midwife, so I have a good idea about medical matters. I am able to read and appraise clinical papers and when I was first diagnosed, I spent day and night on the internet. I also had access to the university medical library. There were many times when I thought " Gosh, I wish I hadn’t read that" but afterwards I was able to relax a bit more and deal with the information I’d gleaned.
As I said, it’s the not knowing that would drive me to the point of - well almost hysteria. The more information I had, the more I understood about the decision making for treatment and all the options available. I was able to discuss with the surgeon everything about my disease including the pathology reports, of which he gave me copies. This gave me a sense of control over my disease. My Surgeon in Sheffield is fantastic, he has included me in all decision making and spent a great deal of time discussing stats, options and drawing diagrams etc, etc. I am eternally grateful for his kindness, understanding and patience.
Your profile is not visible to me so I am unable to see your details. As you know I too am a lobular BC (no ductal involvement). I spent many months seeing a clinical psychologist as I was living in fear of recurrence.I had had my follow up mammogram in Aug 2008 and received a letter which said “there are no suspicious findings”. I was very upset when I read this and realised that this did nothing to reassure me. In fact it made me feel quite angry as there were no suspicious findings on mammogram the year before when I had a 3.5 cm tumour in my breast!!! So how on earth did they expect me to be reassured by this???
Eventually I decided that a risk reducing mastectomy was the only thing that would allay my fears and anxieties. A controversial step I know, but I did wait over a year before I finally came to that decision. My surgeon did not try to put me off as he knew I’d given this a great deal of thought - it wasn’t a knee jerk reaction. So I had a left mastectomy in July 2009 (healthy breast on the path report). As soon as I regained conciousness from the op I felt a huge sense of relief and I dont regret my decision at all. The breast is gone and I do not have to worry about a new cancer in that breast. Still I worry about the possibility of recurrence of the original disease and it’s only in the last couple of months (after my reconstruction) that I’ve started to feel hopeful about the future.
Of course now the whole thing is coming back to haunt me again. I dont know if they will discuss any results with me on weds - it’s unlikely. My surgeon is away for next couple of weeks. I am thinking of asking for MRI scan as neither am I reassured by ultrasound scan after my visit in 2005 when they completely missed the original tumour!!
Anyway, said lump in neck has got bigger and is now mildly painful when I move my head or open my mouth wide (yawn). So will keep you posted.
Ann if you are not reassured by the mammogram have you considered MRI? Forgive me for asking - how old are you? were you pre or post menopausal at diagnosis? I was pre menopausal at diagnosis and this is one factor that limits the value of the mammogram. This is because the breast tissue is dense and shows up as a white mass on the x ray film. Tumours and microcalcifications also show up white, hence they are not always seen (even when a significant size apparently). After the menopause the breast tissue changes and becomes less dense and it’s much easier to assess any changes in the breast tissue. This is why women are not routinely screened before the age of 50 - mammogram is of limited value.
MRI scan is not routinely offered as a screening method - too costly. However you can get this done privately. Look up COBALT APPEAL on google.
An MRI can rule out the presence of cancer to a high degree of certainty, making it an excellent tool for screening in women with dense breasts.
However, breast MRI does have some disadvantages. For example, although it is more sensitive than mammogram, it is also less specific. As a result MRI may have more false positives (up to 30%), which may cause more anxiety, waiting for biopsy results which turn out to be negative. Also it seems pretty pointless using this as screening for mets because once cancer cells are found in distant organs - it can be put into remission but it cannot be cured. It is useful though for picking up local recurrences or new primary tumours much earlier and therefore allowing early treatment.
This is the information that I found about MRI scanning which allowed me to make an informed choice about proceeding with this screening method. As yet I havent done this because I have had bi lateral mastectomies and reconstruction with implants. If my lump turns out to be nothing sinister then I am going to proceed with this on an annual basis. I am saving monthly much like a christmas club for this. My friend will accompany me and we will make a day of it.
Here is a copy of the information I received after emailing UK Radiology about MRI. They put me in touch with The Cobalt Appeal. They are based in Cheltenham so depending where you live it may or may not be feasible to travel. It can cost up to £500 - it’s a lot of money I know but when I considered how much I spend insuring this, that and the other - it seemed a reasonable amount to pay for some peace of mind.
Hello
Do you offer breast MRI and how much would this cost as a self-pay
patient?
I was diagnosed with invasive lobular carcinoma of the right breast
in August 2007. Initially treated with wide local excision followed
by right subcutaneous mastectomy.
The important issue is that due to high breast density the
mammography had poor exclusion value and the tumour was not detected
by this imaging tool. Ultrasound scan was equally limited as it
grossly under estimated the tumour (1.3cm), actual tumour size
(3.5cm). ILC carries a higher risk of developing cancer in the
contralateral breast.
I am awaiting the results of the first annual follow -up mammogram
but as this is likely to be of little value as a stand alone
screening measure I am not reassured by this conventional imaging.
Thank you for your help with this matter.
Vanessa
Thank you for getting in touch.
MRI would be a good way to screen you.
We dont do these in Hereford as we are not a breast screening centre.
Our local expert is Prof Lyburn in Cheltenham. Look up Cobalt Appeal on google. They charge £218 for a basic scan but if they give contrast it will cost quite a bit more (near £500).
Please mention I recommended them
Dr Paul Grech
Ann, I hope you find this information of some use. It is definitely something to consider if you find that you’re not reassured by your mammogram. Risk reducing mastectomy is a big decision and does not eliminate risk completely -it’s not for everyone. I found this decision was the right one for me particularly as my mum died of breast cancer 28 years ago. She was just 49 years old.
Good luck with your follow up on the 11th. My very best wishes to you. I will let you know about the monstrous lump in my neck.
Vanessa (AKA Monkey Girl) xxx
Ps sorry about the long post!! I do tend to rattle on a bit.
