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[Firewalker50]

Hi everyone

I know Grumpy is recovering after her operation and has been fantastic at sharing her journey with us.  From that I know several members have experienced cancer too.

My friend at work has just been diagnosed with DCIS in her breast at the top end of the scale.
They said it might spread and they are pushng her to react quickly and have a mastectomy.

She asked her consultant if anyone has been diagnosed with this and decided not to have the op - and what the outcome was.  She said she does not know of anyone who decided not to have the op.

I offered to ask on here (or if you know of anyone) if anyone has been diagnosed with DCIS and opted not to have the mastectomy - and what happened.   Or did someone wait and have regular checks to see if it would progress?

She is a lovely person, has to support her constantly anxious husband and now her widowed mother who has come to live with them.   She is the one who needs the support now - and I hope they realise that.

I have suggested she contacts The MacMillan trust to discuss it and get some other advice.
Is there somewhere else you might suggest she can refer to or speak with?
She lives in Scotland.

Your advice would be much appreciated and I will share the general content of the feedback without sharing your site names etc.   

If you would prefer to share with me privately, please PM me.

Fx

[CLKD]

Sorry to hear that your friend has this diagnosis.  For me, getting the lump removed: and undergoing subsequent radiation therapy left me feeling in control and also, I felt that I was getting rid of the disease from my body.  My Surgeon went through my 'type' of disease and told me how the course of treatment and prognosis would be - and he was right, every step of the way.

My Consultant told me almost immediately that 'ladies with this condition rarely require mastectomy' - so my news was slightly different.  Had he told me that mastectomy was necessary, I would have had no hesitation at that point.  I had also decided that, should push come to shove, I would have both breasts removed and no reconstruction.  (that probably reads better  )

[Firewalker50]

Thanks CLKD.   x

[CLKD]

Did that make sense to you  - I hope it did, reading it back it seems a bit of a muddle ..........

[Firewalker50]

I think it did.  I did not seem confused - but perhaps I misunderstood.

I read it as:

YOu had it diagnosed and were advised to have lump removed.
Consultant said ladies with this rarely need mastectomy.
You opted for lump and radiation therapy and felt better feeling you were in control of decisions and disease.
If you had been advised to have mastectomy, you would have gone ahead and had double if necessary to keep it away.
Fortunately you did not and you are okay.

Is that right?    That's what I was going to tell her anyway.

Fx

[honeybun]

What sad news FW.

She will be in shock but if I were her I would accept what the consultant was telling me. They do this day in day out and would not suggest this course of treatment if it was not needed.

MacMillan nurses are great and there is a help line I think.

Honeyb
X

[Firewalker50]

Thanks Honeybun.

As you rightly say, she is still in shock. 

Thanks for the advice.  I have sent her links to MacMillan, Cancercare.org and MaggiesCentres so she can discuss what she wants with them and read a bit about it.   She is an intelligent woman and very health aware so I guess that is why she will want to gather information so she can at least question and reassure herself that the advice is the best for her - knowing how much advice can vary from doctor to doctor!

It is her journey and she will go at her pace - I know that.  Fortunately, she will have full support from us at work.   

Thanks for the post.

Fx

[CLKD]

Yep FW - you got it in one which is more than I did when I re-read it  .

Years ago one needed to know how often a Surgeon performed a particular operation and what the results were likely to be.  I think that now we can be more secure in that Surgeons perform more 'routine' operations .......... her GP should be able to tell her if this is the 'right' Consultant.  Apparently we can choose exactly which Hospital we can attend for treatment these days   

[sweatybet]

Hi your friend should look on the cancer research website which gives lots of info on this disease.

Any women should challenge why a surgeon would want to carry out a mastectomy when it is no necessary.

Sb

[Firewalker50]

Thanks Sweatybet.  I had not sent her that link.  The page on DCIS is really good.  I have sent it to her now. 

Fx

[CLKD]

"Might spread" would be enough for me to listen to the Surgeon - or ask for a 2nd opinion

[Suzi Q]

Same with me CLKD I feel the same
Even in Offering MC nurses thats nurses who deal with tem cancer
Im suggesting her husband shoiuld really explain she is probably going to die SOONER rather than later
You cant procastrinate Ive seen 3 pals die of Breast cance one with 3 kids under 5
Her name was Michelle she was lovely 38 gone
You dont buggar aorund with CANCER YOU GET THE B...D CUT REMOVED  ASAP IF NOT SOONER xxxxxxxxxxxxx

[Firewalker50]

Thanks SuziQ

Unfortunately, her husband is as much good as a chocolate teapot. She will need to look after him as he goes into anxiety and depression with HER illness. Not what she needs.

I won't see her for about 10 days since I am going away on hol. She will have had MRI by then. Fortunately for her there is no urgency to decide but I have passed on your comments to her so far.

Thanks again.

Fx

[CLKD]

Enjoy your holiday.  <wave>

[Firewalker50]

Thanks for the feedback on this.  I shared it when I returned to work after holiday.

Update is that she has decided to have the mastectomy because the margins are at the high end so the risk of becoming invasive is higher. 

She is having more tests done (1) to see if she has it in the other breast (some 'fluffy' parts of her image - the consultant's word!) although at this point not considered a problem.

She has considered elective double mastectomy and at this point thinks she does not want to get an infection or problem with the breast that might be unaffected but that might change.

They are testing her lymph nodes to check if it has gone any further.

Her mastectomy is scheduled for June.   Because of a few factors she cannot get the reconstruction at the same time; she has to have a 'stretcher' in for about six months and then go back in for the reconstruction surgery.

She is happy with the medical team she is dealing with and she has spoken to MacMillan.   

She was grateful for the replies posted here and PM'd to me, and wanted me to thank you for taking the time.

Fx