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Absolutely shell shocked

5 REPLIES 5
Chris631
Member

Re: Absolutely shell shocked

Thank you so much for your kind reply Jan  it has put my mind at rest a little, but I think I probably won't be in a good state of mind until the outcome of the mastectomy and results of lymph nodes are known, which is not until the 24 th October a week after my op. I did go to the Maggie's center today and spoke to a lovely woman who answered all of our questions and gave some good advice. It's more than I have gotten from my consultant in the 5times I have saw him. I will definitely be going back when I feel ok after the op. 

 

You just have been to hell and back with what you went through so glad your out the other side.

 

Would you let me know how your mastectomy went and do you have any problems with having all of your lymph nodes out, if you don't mind me asking. 

 

I will certainly give Youtube (Progressive Hypnosis) a go. 

 

Thanks again 

 

christine xx

 

Jaybro
Member

Re: Absolutely shell shocked

Hi Chris

 

I can see Ruthie is keeping you grounded a little. I’m so sorry you’re in this situation. Last year, my GP referred me ‘just to get it checked’ and my consultant told me he didn’t think there was anything to worry about. I’d presented with two tiny bumps on my nipple and they located a lump between my ribs under an ancient scar. My mammogram 6 months earlier had been clear and a (careless) ultrasound found nothing much. A week later I was told I had cancer and a week later I was told I would need a full mastectomy and axillary clearance as my sentinel node was affected. It got worse with each test - two tumours, two different cancers - but my luck arrived with the tests to see if it had spread. A CT scan and bone scan indicated no spread despite 19 of the 21 lymph nodes being affected. I then embarked on chemo, radiotherapy, bone therapy and hormone therapy and here I am, a year later, battling with chemocurls and a few side effects but WELL. 

 

I really feel for you. I was utterly terrified but, unlike you, I wasn’t afraid of the cancer but the treatments that might make me sick (a total obsession). Maybe that fear distracted me, I don’t know. All I know is I got fantastic support and treatment every step of the way. I was told by my consultant surgeon that he’d removed all the cancer and, after transferring to the NHS, they told me at the start of chemo that I was now NED (no evidence of disease) - everything was now to prevent a recurrence. I believed them And just let them get on with it.

 

I strongly advise you to ring the number at the top today if you see this. The nurses are so reassuring and they seem to ask all the right questions too. Please don’t google anything. Dr Google (as I found out last week after resisting for a year) is not your friend and has the potential for increasing fear rather than reassuring. After all, we are all different and our cancers are all different. The difference between a few nodes or an ER score can make all the difference to your treatment plan compared to another person’s.

 

I can’t tell you it will be an easy ride. You may find your treatment plan changes with each new bit of information but the important thing to hold onto is that breast cancer is not a death sentence - the recovery rate is extremely high. It’s futile to tell you not to be frightened. I actually went into a kind of cancer-numbness (I only managed to cry briefly after I was ‘discharged’ and free) and I rarely thought about it. I just obsessed about being sick till the doctors proved I was wrong. I found listening to Youtube (Progressive Hypnosis is my favourite, with Michael Sealey and Good Vibes close second) very helpful when fear swamped me and my GP offered medication for short-term help with the panics. There will be what feel like interminable waits and there’s no shame in asking your doctor for help if you feel your world is falling apart. I also had a good friend who managed to keep me grounded as my husband was more worried than I was, poor thing.

 

I hope you get some reassurance and wish you well in what lies ahead - it’s manageable and we get through. Take good care of yourself.

 

Jan x

 

 

ruthie2
Member

Re: Absolutely shell shocked

Not at all chris it’s so much to take in I know . Message me any time.

perhaps you could see another nurse if there’s a Macmillan or Maggies at your hospital, there’s nothing at mine at all but that’s not usual. I rang my gp once asking for some support and he referred me to the local hospice which I wasn’t sure about so haven’t acted on it.

i have 4 so called grown up sons 2 still at home so I live in a male household and have really no one to talk to so these places are a god send.

i think it’s quite common for tumours to end up bigger, mine did but only by a few mm’s..

theyll need to know a few things before they decide on treatment, such as whether it hormone receptive (er and Pr) which mine was - it’s a good thing I think. The her2 part takes longer to come through but it is important in deciding on treatment.  

No I wasn’t lobular, it was micro papillary which is quite rare, it wasn’t there 2 yrs ago so grew quite quickly, I found the lump myself - thought I was imagining it!

 

I was told that further radiotherapy to my armpit as well as my breast is just as effective as a lymph node clearance but I think different consultants have different views, I’m just not keen on another op if I can avoid it.

i had to have chemo because it had begun to spread to the nodes and because micro papillary likes to spread very quickly. They did the predict online thing which showed me the percentage benefits of each treatment so I could see if it was worth it.

i see my oncologist in a few weeks to sort out the radiotherapy and then hormone meds as well. Still no scans mentioned but I know some have bone scans at this point.

a good friend of mine had lobular a year or 2 ago, she had a mastectomy and then went straight onto hormone meds, no chemo or radiotherapy at all, so it just shows that we are all very different with different treatment plans.

keep asking questions, no one will mind and it’s good for me anyway to be able to help in any way.

bigs hugs xxx

 

Chris631
Member

Re: Absolutely shell shocked

Thank you for your king reply. I did see one cancer nurse where I had my lumpectomy, but she was so matter of fact that I don't see the point of contacting her again. I think it's the shock of hearing that what was originally told to me about the side of the tumour was a lot bigger. I'm not sure what is after the mastectomy the consultant hasn't said, he did mention radiotherapy, but had said he needs another MDT meeting and what comes back from the pathology before any next steps. I know that there is good success rates for breast cancer, but that just keep thinking the type I have which is lobual is hard to pick up so how long has it actually been there. Was you lobular?

not sure what micro papillary is?

 

i think he is going to do lymph node clearance when I get the mastectomy. 

 

Why did you have to have chemo after yours and not just radiotherapy?

im 56 and not in bad health just high blood pressure. 

Nothing's been said about scans

Sorry to ask you loads of questions, but I just keep thinking I need answers, which I know probably is sending me round the twist a little. 

 

Would you mind me chatting with you again 

 

thanks 

Christine x

 

 

ruthie2
Member

Re: Absolutely shell shocked

I know exactly how you feel as it happened to me in May this year, went from lumpectomy and radiotherapy only to waking up with a therapeutic mastectomy and being told 2 weeks later that 3 out of 4 nodes had cancer. Even though the ultrasound was clear, the tumour became micro papillary too.

ive just finished chemo 3 ec and 3 docetaxel, kept my hair too. It’s not easy but it’s not as bad as I thought it would be. I was given max dosage as I’m young apparently st 55, fit with no other health problems.

i have to make a decision now. I’ve been given the choice between full node clearance or extra radiotherapy to include the armpit area as well as the breast. I think I’m going for the rads. 

 

It was a shock but I don’t think I it’s really hit me as I haven’t cried or anything. I did have melanoma 6 yrs ago and omg the trauma I felt over that!! I haven’t got s breast care nurse or anything but I do wish I had as the skin care nurse I had with the melanoma was fantastic and really helped me. Maybe you could get I touch with your nurse if you have one?

chances are it won’t have spread further and all the treatment yet to come will be several sets of belt and braces to ensure everything is done to stop spread and recurrence. It won’t stop the worrying but time will. 

I haven’t had any further scans at all which concerns me but I’m told this is normal and that they are confident that there’s nothing else anywhere. Will you have further scans do you know?

please ask me if you have any questions I may not have answers but I know where’s your coming from xxxx

Chris631
Member

Absolutely shell shocked

l am in total shock and can't stop crying. I had a mammogram, ultra sound and MRI and was originally told that my lobular breast cancer was about 4 centimeters and the the consultant said he did not think it had went in to the lymph nodes so I had a lumpectomy last Thursday and had the mind set that it was going to be ok with some radiotherapy after wards because they hopefully had got clear margins. I have went back tonight to see my consultant who has confirmed that the tumour was actually 6 centimeters and it was in one or two of my lymph nodes as he felt the others and didn't think there was in any of them. I was absolutely shell shocked. He has said because the tumour is the size it is he wants to undertake a mastectomy next tuesday and will remove quiet a number of my lymph nodes knowing as a clearance. He has also said about having radiotherapy afterwards. It's like my world has come crashing down. I keep thinking that's it I am going to die and not see my sons settled with families of their own. I am shaking all the time and can't stop crying. Please any advice on this would be greatly appreciated as I don't know if I can cope with this. I just keep,thinking it has spread to other places in my body, please help me