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Shocked

12 REPLIES 12
Guest user
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Re: Shocked

it sounds like u def need to change hospitals am i ok to ask which hospital yr at at mo x
Guest user
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Re: Shocked

The BCN came to see me while I was in and she told me that the only thing on my treatment plan was the mx. No chemo, radio therapy or even a recon. I asked about recon and was told it was not suitable for me as they thought I was too ill. Not sure what information they have about me but I am not actually ill. I just have a problem with headaches which has been going on for several years.

I spoke to my GP about being referred to the larger hospital and after I told him what I had been told he agreed that I should be seen at the other hospital where my consultant for my headaches is located. He said they told him that they had not had the mdt meeting yet but they told me they had had it. Is there any wonder I have trust issues with these people.

When asked about what my cancer was the Nurse said something unusual, she said that they were unable to test. If that is so, how do they know that I have cancer?

Totally confused.
CJ
Guest user
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Re: Shocked

Hi
Thank you for taking the time to get back to me. I have been in hospital since Thursday and have only just escaped.
nonsuch
Member

Re: Shocked

Hi again CJ,
I too had widespread DCIS...this is cell mutation/s in one or more ducts. In my case there were two ducts affected, and the measurement is taken from the outside edge of one to the outside edge of the other. In my case the cancer cells themselves were tiny, but they were 7cm apart. If there had been just one, they would have done a lumpectomy, followed by radiation treatment. Dcis does mean that it hnt spread outside the duct, but depending on the grade, it's more or less risky, mine was high grade, the most 'active' so to speak. If they had taken the whole 7cm area affected n me, I would have had a massive chunk of my brest removed...not a good option.

Sometimes the DCIS is found to have broken out of the duct, so to speak, this is why they test the lymph nodes...sometimes when they do the op they find there are other cancer cells that are hidden behind the DCIS, or in younger women, the tissue may be too dense to see. have you had a look at the DCIS info on this website, and has the hospital given you the booklet about it?

Nothing was showing in my mammogram/scan etc,but I had an op to check 4 lymph nodes nearest the top, the op was a SLNB. Luckily for me, they were clear. If I had had cancer cells in my lymph nodes, I'd probably have had a course of chemo to attack the cancer cells as well as having lymph nodes removed. In either case it should be possible to have your breast "refilled" at the time of your mx if you choose that option. I would have found it tough to be one sided! But people are different in how they feel. If there is just one lymph node with only a slight sign of cancer, it might not be necessary to remove them all. You should have a chance to have all the options and risks explained. you could phone the breastcare centre and ask for an urgent apptmt to see a nurse? Or with a psychologist? Or as others say, contact your GP and ask for urgent referral to another hospital, as is your right? ( But don't rely on GPs advice, few are really up on the treatment or even the quality of hospitals.) I felt very let down by GPs..I was told I knew a lot more than them, and asked for details of procedures.

In terms of small or large hospitals, I attended a small one initially, but they are restricted in the options they can offer you, so I had to transfer to another for the surgery. The top rate surgery if only available from really expert plastic surgeons, you see, but doing a mastectomy on its own can be done by surgeons with less training. It would have been easier to have started at the large hospital in the first place, as the transfer causes some delays. I was (too late) advised by a medical professional that for any major treatment one should always go to a teachig hospital, even if travel is a bit further.

Pm me if I can help any more directly, please don't beat yourself up about the way you feel, it's very natural to be flat, or limp or heavy or angry...it gets us in different ways. If you can't sleep, ask your GP for something to help, that's another natural effect!

Lots of love,

nonsuch

Zeppa
Member

Re: Shocked

I'm sorry to read this, cajten. If you have mobility problems and would have parking problems, it sounds as if the other hospital would create problems. Would it be possible for you to go to the other hospital for the main treatment and have the chemo nearer home?

Totally Confused, DCIS is usually cancer that has not *yet* spread. I don't understand why a node is affected if it's DCIS. That's why I must say it sounds right to me to get a second opinion. But when pure DCIS is removed, they leave a large margin around it and that often means a mastectomy. Having to have a mastectomy does not mean that your future prospects are necessarily bad, on the contrary, DCIS is good. But is there some invasive cancer too, re lymph node. cajten, you should be given full advice and also with regard to why you need chemotherapy and whether you're a borderline case as far as the need for chemo is concerned.

Guest user
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Re: Shocked

Sorry
Guest user
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Re: Shocked

Thank you all for replying to me. I have had a sleep but still feel bemused by it all. Thank you for giving me ideas about things to ask today. Like Totallyconfused I wanted to know why so much but the nurse did say it was because such a large area was affected.

I am pretty sure I should be feeling something but I seem to have shut down, I haven't even cried. I do feel as though things are out of control. They spoke of mx but no other treatement but I don't know if that was because they were out of time or because they have nothing else planned.

My family are pressuring me to go to another hospital but the next hospital is 30 miles away and yes it is bigger but does that really mean better? Not sure I even want the added stress of trying to use that hospital where just getting parked is a nigtmare. (Blue badge or no).
TotallyConfuse
Member

Re: Shocked

I thought DCIS was one of the good ones (not able to spead) so why the removal?
TotallyConfuse
Member

Re: Shocked

Liz - Hi I also have IDC but did not need chemo - why do some and others not, does it depend on the size and if nodes are affected?
nonsuch
Member

Re: Shocked

Hi CJ,
You have had a very bad day indeed, I and lots of others will understand how you feel...it's exactly a year tomorrow since my biopsy and diagnosis of DCIS. I was dumbstruck, shocked, horrified... however, both the surgeon and nurse spent a lot of time going thro things with me.

Like you, i thought of it as havg my breast cut off, that i would be mutilated. The main thing I'd like to tell you is that it isn't quite so bad, it isnt like this at all, it really doesn't have to be a matter of cutting it off just like that.

You must be very shocked right now, it takes your head and body time to come to terms with it all, and there will be tests and more tests. BC is a very personal thing and medics have to make sure they understand what each of us needs to sort it out. It's a horrible time but you will come through it, really you will. The help line people are brilliant, do call if you need someone to talk to, and ladies on this forum will also help you through.

You may well be able to have an immediate reconstruction at the time of your mastectomy, as I did, so make sure you ask about this and take time to weigh things up, don't be rushed into things too quickly. There are a lot of different ways to do this, I had mine "refilled" with fat from my tummy last November. It is a big op, but it's worth it. Two weeks ago I had a second op, a minor procedure, to finish things off, and tomorrow it will all be unveiled when i have the dressings taken off. I've been keeping track of progress with photographs from the start.


Guest user
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Re: Shocked

Hi cajten,
So sorry you have found yourself on here but you will get lots of support. I am shocked about how appallingly you have been treated at what is a traumatic time for you.

I am pretty sure you do not have DCIS if lymph nodes are involved - I made that mistake too although had no lymph node involvement. In my experience, oncologists don't tell you very much unless you ask a direct question - trouble is we don't know what to ask!

I was diagnosed with IDC last September, had mastectomy (aka mx on here ) 10 days later and started chemo a month after that. I finished chemo 6 months ago and it is doable but not a bundle of fun.

I would suggest you find a thread, or start one, for women starting chemo same month as you and you can all support each other and compare notes.

Good luck and take care, Liz.
June_BCC
Member

Re: Shocked

Hello cajten


Welcome to the forums. I'm sorry to hear of your diagnosis, the first few weeks are always difficult when coming to terms with your diagnosis and treatment.

As well as the support you will receive on the forums you might find it helpful to order the BCC resources pack. It has been specifically designed for those newly diagnosed and contains information to help you understand your diagnosis, test results and the various treatments available. If you would like to order a copy just follow the link bellow:-

http://www2.breastcancercare.org.uk/publications/diagnosed-breast-cancer/resource-pack-primary-early...


You may also like to talk things through with one of the helpline staff, they are there to offer emotional support as well as provide information. The free phone number is 0808 800 6000 and lines are open 9-5 Monday to Friday and 10-2 Saturday.


Best wishes


June, moderator

Guest user
Not applicable

Shocked

Hi
This morning I attended the breast click to get results. I was expecting the your wasting our time attitude. I was so shocked when the Dr said "they had found a bit of cancer" and I needed a mastecttomy. I asked him how long I would be out of action as I have a nine year old that I need to get to school. He started to say some that I think was like six to .... Then some one knocked on the door to say that I was needed by the radiologist as he had been asked to perform another biopsy this time from under my arm. Thinking that I would get a chance to see the Dr a again I let myself be lead out of the room.

After the biopsy I was on my way to the waiting area when a nurse came up to me gave me a card and told me that she didn't have time to speak to me. She wanted to know what the Dr had told me but as we were in the middle of the waiting area I was a bit vague. Didn't really want everybody to know that I had been given bad news.

I got home realising that I didn't know why I had to have a mastectomy, when they wanted to do it or what else they were thinking of doing to me. I was a little upset.

Later today I got a phone call from the nurse who had given me the card who invited me to come and see her tomorrow. (Here I need to mention that I have mobility problems and getting a round is a bit difficult). She did answer a few questions for me. Apparently I need a mastectomy as the affected area was large. I was thinking it was so they could chop me up like rubbish. I did ask the Dr what type of cancer I had he said DCIS but he did also say that the node? they biopsied last week was affected. He also said they caught it early. Doesn't feel early if I need a mastectomy. I asked the nurse if they were just going to chop of my breast and that would be it. She seemed a bit shocked that I had asked that but I did think that today I would be told what they were going to do and what options I had. Not quite.
Sorry for moaning, I don't really make a habit of it but really can't believe how today turned out. Not really sure what I should be asking the nurse tomorrow as I have been thrown for six.
CJ