who's telling the truth?

I feel I’m being forced into a MX as the surgeon is concerned. I haven’t had a bone scan and told them that if the BC has spread then I’d rather be left alone. I have two tumours so therefore a lumpectomy is apparently out of the question but a different surgeon said he would perform this but not recommend it. I told the NHS surgeon this and he said he’d never heard of it before.

I can’t see the other surgeon as it was in a private hospital where they told me the treatment would be £3,500 but ended up £8,000 which I couldn’t do.

I told the NHS surgeon that I wouldn’t fare well with MX and that alone would hamper my recovery (I’ve toned that down for the forum.)

I’ve heard about alternatives for hormonal BC but mine is triple negative and I was told that surgery is the only answer. I asked for a report so I knew what I was talking about but it didn’t arrive. I feel as if they are just taking over my life for good reasons I know but never the less to carry out a life saving operation when I may have secondary problems seems incorrect to me.

I’ve been told repeatedly that if I don’t have support from family and friends then i’m unlikely to get over this which I think is unfair. I don’t have a husband or partner my family live 200 miles away and don’t know about this and I want to get better and I have always been a fighter.

They are removing my lymph nodes as they said they could see on the scan that they are affected so they’ll remove them all and depending on how many are affected will determine if it’s travelled to another part of my body.

I asked for a scan and they said that won’t determine if any fragments have broken away. Counting affected lymphs seems like a lot of guess work to me.

I was diagnosed with 2 agressive tumours on December 18th I was offered the operation last week which I told them I wasn’t ready for and again for this week but I am being bulldozed into it all.

HI Chrisy

I really feel for you as like me, you feel like control has been taken away from you and you are being told what you have to do. It all happens so quickly and you feel you are being forced into something and that you don’t have time to think about it properly or get all the facts.

I actually was told what treatment I was having and didn’t question it - I couldn’t wait to get on with it. I had a large tumour which had spread to my lymph nodes and as far as other scans/tests could tell it hadn’t gone anywhere else. I was told right from the start I’d have a mastectomy and that each part of the treatment was very important, the chemotherapy first to kill off as much as possible and make sure the bad stuff didn’t go elsewhere in my body, a mastectomy to remove the whole area and get good clearance (this was a mastectomy as I had widespread DCIS too), then radiotherapy and a year of herceptin. I didn’t have reconstruction straight away as I wasn’t allowed it. I’ve had plenty of time to think about what I want now though.

When you have a life threatening illness, you don’t always have much time or any time to think about things or research as it’s important to get on with the treatment.

I have heard people on this forum talking about having the original area effected removed even if they have secondaries as there is evidence this can stop the cancer being as aggressive. The types of reconstructions that can be done these days are amazing. The plan for me is to have fat and skin from my bottom taken to build a breast. Photos I’ve seen of other ladies who’ve had this done is amazing.

It’s really not easy having to deal with a life threatening illness and then being disfigured but I think you will find from reading these forums that a lot of ladies have the operation and don’t feel half as bad about it as they thought they would.

Regarding lymph nodes - several of mine were effected and some people have a lot more - it doesn’t necessarily mean it’s gone elsewhere in your body yet if they are effected but it is more possible than if it’s contained just in the breast area. I think they can tell a lot more after the surgery though.

I just want you to know that for me, it really wasn’t as bad as I thought it would be. The lead up to it was harder psychologically. I hope that we can help you make a decision either way and I hope you can come to terms with having the surgery. There is a thread called ‘Terrified’ that I have been chatting on with other ladies since 2007 and this takes you through a group of us who were having/due to have surgery who really were terrifed and you’ll see we all managed to get through it was no ill effects. The support we gave each other was remarkable and made such a difference.

Best of luck
Ruby xx

Dear Chrisy

Please feel free to call our helpline for further support and to talk your concerns over with one of our trained helpliners or specialist nurses, the line is open 9-5 weekdays and 9-2 on Saturdays on 0808 800 6000.

Take care

Thank you that’s helped a great deal. I am receiving alternative treatment but do know it isn’t a cure. It’s the loss of control and someone else making the decisions without the full facts that’s concerning me. I say without the full facts as I haven’t had certain tests that others seem to have and if it has spread I’d rather just be left alone to be honest.

I’ll read the ‘terrified’ post aswell.

Thank you.

Hi Chrisy sorry that you have had to join us - but welcome…:smiley:

I think everyone will tell you that these early days are some of the worst until you find out what is happening and exactly what you are dealing with…

I think it would be really good for you to phone the helpline as they may be able to explain some of the things that are concerning you at the moment…

Until they have operated the doctors will not be able to tell exactly how many lymph nodes might be affected and also be able to confirm exactly how large your tumour is etc…

Do keep posting as you will find loads of support on here and there is usually someone who will know the answer to any questions you have…

Take care

Theresa x

Hello Chrisy
Sorry to read about your diagnosis. As other people have said - once you start doing something about the cancer you will start to feel better. The early days are awful.
Don’t worry about doing this by yourself. I’m on my own and managed OK throughout surgery, chemo and radiotherapy with some help from kind neighbours and friends.
I was lucky enough to be able to have a WLE as I dreaded the thought of a mastectomy. Have you explored the possibility of having a reconstruction at the same time as a mastectomy?
Best wishes

Hi Chrissy,

I cant believe youve been told that if you don’t have support from family and friends then youre unlikely to get over all it - what kind of supportive advice was that??
I also live by myself, no partner or husband, although my family are much closer (20miles)and I have many supportive friends. You will get over it with or without support from a partner, you sound a very independant woman and you will want to keep a degree of independance as I did.
I cant really advice you on how your treatment should go, but if it was me, I would want a bone scan and CT or MRI first, just to know what I was dealing with first. All my professionals have been really good, but they always seem to be suprised when I ask specific Qs and want to know things in such detail - I guess they deal with a lot of people who are happy not to know details and just to be told the basics.

Goos luck with your decision

K x

To be blunt (sorry), at some point you will be unable to be ‘left alone’ if possible secondaries and the main cancer are ignored now and you don’t have the op. If you don’t have the op, you won’t have a breast left anyway. You have no choice but to go ahead with the op as far as I can see; you are merely delaying things.

A work colleague (now friend) has recently had a mastectomy and boob reconstruction and she’s pretty impressed with it. It’s out of the way now for her and she’s getting on with chemo. I’ll soon be joining her.

So please, don’t waste any more time and get the shit off your chest!!