My story - and it's hard work!

Hi all!

I have already posted some of my stuff, but now I come aback again. I am the person who has to wait six months to get an answer. I don’t talk to people about this, only my husband, so this is the one place. I don’t tell people because I can’t bear anyone to tell me not to worry it probably won’t be anything. I know that is a strong possibility, but I wouldn’t be checked if that was certain - obvious isn’t it! - and I have a friend who recently was treated for cancer in very similar circumstances.

Quick backround:

Found a very superficial lump back in March. Made appt with GP - which was 3 weeks away - but nearer the time the lump had disappeared so I cancelled. The lump had been there, very clearly, so I was puzzled, but relieved - and there was nothing to show. (Subsequently I have realised it was probably a lymph gland; my big boobs mean I am prone to heat rashes, which at times can be hard to control and can lead to some inflammation.)

The got an invite for routine mammo for mid june. Checked the site for above lump, and there is was again. Wrote it down on the form you take with you to mammo. By the time I got there is was gone again. But they told me that as I had added a comment I was likely to get called in to the clinic, so not to worry if I got the letter. Which I duly did, quite quickly in fact.

Went to clinic, assuming it was about said lump; it wasn’t - there was a suspect microcalcification (as I have since discovered they are called) in a different part of my breast. Quick panic there and then. Not because of the spot as such, but as I was due, within days, to go to Sweden to look after my 92 year old mother and I was fearful I had to cancel. Most worried about worrying her - and our daughter, who would also have to be told, as she was also joining us for a few days. Re-assured about that, as the nurse told me that any potential intervention could wait until I got back to the UK in august. Huge relief. And happy then to go along with whatever they suggested. They tried to do a triple assessment, but due to it’s small size it couldn’t been seen on ultrasound(normal, as I understand it) nor could it be felt (again normal) and they couldn’t get at it to do the stereotactic biopsy. They tried, oh, yes, they tried. But I have big boobs and this was far back, near my chest wall. So the unanimous decision was to leave it for 6 months and then start again. I was told by the BC nurse that a lump takes 9 years to grow, generally, so nothing would happen fast. I accepted all this, as I could certainly see what the problem was. But it has obviously made me anxious.

To add to this I had a similar scare about ovarian cancer about 4-5 years ago, due to having post-menopausal ovarian cysts. It was the compassion on both the nurse’s and the doctor’s face that time that did me in. That time I opted not to have my cysts out. The specialist, who I saw, used his experience and expertise to judge the cysts likely to be quite benign. To avoid anxiety he offered for me to have them out - some people do, but as I am generally averse to unnecessary ops I declined. However, that meant it took 18 months with regular checks to be finally cleared. It was a strain, not a constant one, but a strain all the same.

Back to my boobs, I went to Sweden within days of above visit to the clinic, but found that contrary to how I had thought I would feel I was sort of constantly anxious. Not to the point of not being able to do things, or enjoy myself, but as soon as activity stopped my concern tended to return. And this still happens. I can keep it in check up to quite a considerable point, but not all the way. And I tend to count the weeks to the point of marking it my diary. And trying to add it up on my fingers any quiet moment.Sort of wishing my time away, which also feels quite sad, as I feel ‘now’ is there to be experienced and preferably to be enjoyed, not to be wished away.

Then the other night I read the NICE guidelines where it states that you SHOULD have an answer within two weeks. So where does that leave me?

Consequently I contacted the helpline nurse and asked: She confirmed that it can indeed be difficult to biopsy in my situation. It happens. (So why isn’t that mentioned anywhere??? It would make me feel more one of a crowd if it was!!!)So she suggested I could go for a second opinion etc. Also said it should be possible to biopsy somehow, though it might mean an open biopsy. (don’t much fancy that one!)

Just days before that I had been in contact with the BC nurse to ask for the next appt to be after 11/1, as I go again to visit elderly mum just after Christmas, returning on 7/1, then it’s my husband’s 60th birthday. My six months are strictly speaking up on 28/12. But it would be nice just to get my Sweden visit and birthday celebrations over before I have to deal with this. And if I go for tests and wait for them it could invalidate my travel insurance.

So currently my feeling is to wait 'til jan and then go ahead, hoping that will be the end of it all, eg that the spot either has gone or not changed at all. If not I now know I cannot tolerate more waiting. And I might change my mind before then. I have also realised very much it is the not knowing that is hard. I know quite a few people, my 92 year old mother included, who have had breast cancer and are now fine. So I am not wondering if I will survive, it’s just what it is, that little spot of mine. My husband, though supportive, isn’t good with talking about what isn’t confirmed to be there. He feels, I think, it makes more of it than it is. And we did have the (unnecessary, as it turned out) anxiety about the ovarian cancer not so long ago.

The spot, by the way, was small, 5mm or less, a small bright center, sort of, and a clearly visible grey shadow around it. I could clearly see it.

I suppose I am really just looking for somewhere where I can really express my anxiety!

Hi Aquinnah,

Firstly, I was quite appalled at the way you’ve been treated and felt compelled to answer your post!
(you’ve come to the right place, noone on this site will tell you to ‘stop worrying, it’s probably nothing’.)

I have had breast cancer for 7 years now and in that time I have never heard of anyone being told tumours take 9 years to grow!! I think that is complete and utter rubbish, and quite disturbing.

The fact that its difficult to biopsy doesn’t mean you aren’t entitled to a definitive diagnosis. What are they waiting for? The lump to get bigger, to make the procedure easier for them??? If necessary the lump can be removed under anaesthetic and examined - quite a common procedure, and entirely necessary for a diagnosis if a biopsy is impossible, I would say. No wonder you are worried and anxious, you have every right to be.

You absolutely need to get a second opinion, and as soon as possible. The time spent waiting, worrying, and not knowing is awful and most consultants and BCNs understand this. I can barely believe you have been fobbed off like this!

Having said all this, lets hope it does turn out to be nothing, but you should never have to wait 6 months to find out!

Good luck

Do let us know how you get on.

Bex xxx

Hi Aquinnah

Wouldn’t an MRI scan help to identify its position?

Ann xx

agree totally with Bex - this must be dreadful for you Aquinnah- am so sorry you are having to go through this waiting game xxchipperxx

thanks for all your support - and belive you me it’s nice to have it!!!

I don’t have a lump, it’s a spot. And yes, I may decide to do something, but I need to think about it.

The nine years bit sounds a bit much to me too, but assume it’s from a spot - microcalcification - to something definite that takes time. Though clearly some are much faster than that. In my trainling through the web, as you do, I found somewhere a rather cynical comment - on some breast cancer, how should you deal with difficult microcals kind of site - that either 6 months is fine because they are so slow, or if you ahve a really aggressive it is too late anyway, so it doesn’t matter. i have to say I ahve seen that only once.

anyway, you comments are food for thought - I shall now inwardly digest.

Thanks!!!

I too had a “spot”, most definitely not a lump. Mine was found on a routine mammo and I was told it would have taken 8 years for it to grow into a lump that I would have been able to feel for myself. Mine was 8mm and I had it removed by surgery (just one small neat little scar) and then 5 weeks of rads, because although it was tiny it was also the agressive type. Fortunately there was no spread to the lymph nodes or vascular invasion. So, although these things can take a long time to grow, I would have thought removal was a lot better than just leaving it where it is.

Hi Aquinnah,
I just wanted to say hello and offer support - what a position to be in. I know from the past few years of my life just how difficult it is to put your own fears and needs first when there are others that you want and need to support.
All I would say to you is that amongst all the others is yourself and you need and deserve for your self to be cared for. I understand that you have hard decisions to take, but I hope that you will also look after yourself and at least take advantage of what this forum can offer
best wishes to you, and love
Monica x

if at all possible have that appointment brought forward and ask to have the ‘spot’ removed and biopsied.It should be possible to have it done as a day case.Then you would know exactly where you are and could either get on with your life secure in the knowledge that all is well or enter into a treatment plan which will ensure that the problem is resolved as soon as possible.They shouldn’t expect you to wait till January.
Love Val

You know, when I read all this I feel so moved by all this support!!! It is nearly, truthfully, bringing me to tears - or at least a bit damp around the tear ducts.

I must think again; I do wish I could think of anyone to talk to, I must think through my options on that front; my friend, whose spots were cancerous, decided after lumpectomy and radiotherapy not to go with chemo, but to do some strange German treatment instead. She was over the moon about it,and I think, though she is a caring person and would agree, I am sure, with all of you, I fear she would try to push me into the same strange German thingie -which I can neither afford, not am I convinced by it. I do have other good friends, but my fear is that they will offer false re-assurance and that I can’t bear, to the point of not talking about it at all.

I am giving myself a couple of days. I think I may try to do a ring around tomorrow, to other helplines and just test their reaction also. And maybe this one as well. We’ll see! I hve a night to let my thoughts mature. And I will keep you posted what I decide to do.

Hi Aquinnah
please do keep in touch. All decisions are yours, but you have friends here who do understand
monica x

It is now the next morning: have my thoughts cleared? Not sure, but I think I am moving towards taking some steps sooner rather than later.

Bexs - what a position for you to be in! You clearly know the ropes. I am sorry to hear about your situation. To live with it so long must be so hard. Thank you for your support and your encouragement to do something about my own.

Redders - I think what you said about the 8 years was roughly the same as I was told, though I didn’t remember all the details (it has already been over 10 weeks and it all seemed to happen so suddenly I don’t think I retained all that happened. Particularly as I hadn’t done any preparation work, as I had thought I knew what it was all about.)Anyway, thank you for the reminder. Also there is my friend, who also had spots, two of them, then one op to remove, a further op to remove some lymph glands, radio therapy and then offered chemo as well. So just ‘spots’ can be aggressive enough quite clearly.

And all the rest of you, I appreciate your support more than I can say! And it is making a difference. I feel heard, which is so important!