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Confused

9 REPLIES 9
Guest user
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Re: Confused

hi misspiggy
because of your results post opp do you need any treatment for this now ? this is what is worrying me i have just been for my pre op but im seeing the surgeon tomorrow to see can i have both boobs done at the same time,i am having tram flap on 11th nov how was your op and how r u feeling now?

Diana
Member

Re: Confused

I was clinicially diagnosed with DCIS in June. After a mammogram, an MRI scan and a couple of biopsies, they confirmed in mid August that I have a high grade comedo necrosis DCIS. I was told to have a mastectomy and offerred an immediate DIEP reconstruction, but I had to wait and did not have the operation until 8 October. My post operative path test show that the DCIS has become invasive. I often wonder if this invasiveness could be contributed due to the 3 months waiting in view of the aggresive type of DCIS.

Guest user
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Re: Confused

hi cathy i was initially seen within the set guidelines but with surgeons having there hols and me having to pack in smoking thats why its been so long i did ask my gp for a referal somewere else but he said that would only delay my op even more i do just want to get it out the way but i want it to be right first time and im also very scared.

Guest user
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Re: Confused

hi suzanne
i am being treated at whiston hospital and yes it is the same breast as before they said i had to be nicotine free for four weeks as i was a smoker then the two surgeons were on holiday now i have a two week wait because they said 8 weeks nicotine free would be better for me i have an appointment on thurs to see if the surgeon will remove both my breasts as my other one is full of cysts anyway it was this boob i went to the hospital with as i had a large lump there which was a cyst that they drained and then decided to send me for a mamogram thank god, i did ask straight away for both my breasts off and was told no he dusnt take healthy breasts off ive now got to convince him i am serious about this i dont want to have to go through all of this again.

ForumMember
Member

Re: Confused

The NICE guidelines state that no-one should wait more than four weeks to start treatment. Why is your hospital deferring your treatment for so long? If it is because of shortage of beds etc, then this is unacceptable and your GP will refer you elsewhere. Even if waiting three months won't affect your outcome, you want to get it done and out of the way as soon as possible for peace of mind. Because you have had previous treatment with radiotherapy, this is why you need a mastectomy. Many women have had this done without a problem, so don't worry. The main thing is to get it done.

Guest user
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Re: Confused

I am totally disgusted at your having to wait so long for surgery, especially bearing in mind that you have had bc previously and at such a young age.

DCIS is by its nature 'in situ' so technically hasn't invaded outside of the breast duct(s) but nobody has any idea whether or when it will become invasive. However, these forums show that when results are given a couple of weeks after surgery, there is sometimes an element of invasive cancer there with DCIS. I pray that this is not so in your case.

What hospital are you being treated at?.Perhaps others on the forums who are treated there could give their insight as to whether this is the norm or not?

As a matter of interest is it in the same breast as you previously had it?

Guest user
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Re: Confused

hi
i was diagnosed with dcis intermediate on the 12/08/2008 and am not having surgery untill 11/11/2008 im really worried about waiting this long but am told not to as this is a really early cancer i was 29 when i got my first breast cancer 14 years ago, i had a lumpectomy with chemo and radiotherapy,so i am a little anxious now waiting for this op i am having a mastectomy were the take the tissue from ur tummy and use that im really worried about this

Guest user
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Re: Confused

Cathy, thank you, you have put my mind at rest. I was high grade DCIS last year, mastectomy followed, but no radio or chemo. Oncol said I would be fine now......I'll hold him to that. 🙂

Linda x

ForumMember
Member

Re: Confused

Hi Myrtle

As a fellow DCIS sufferer, I know what you mean. Is it or isn't it cancer? I spent a long time with my oncologist this week asking just this and know feel that although I haven't got "cancer" in the true sense (ie invasive with potential to metastisise) the DCIS may return in two forms - either back as DCIS again or back in the form of an invasive cancer. It is for this reason that DCIS must be treated with the greatest respect and removing the potential (breast tissue) will reduce its chances of returning of invasive cancer. Until the researchers work out which type of DCIS will return as invasive, we are faced with these radical treatments. My son had cancer years ago of the kidney. Then, the regimen was to remove the kidney and blast the child with chemo/radio etc, with all the horrible side effects that my son is now suffering from. Nowadays, the treatment is far less aggressive as they know which tumour is likely to spread. This really shows how much research is needed for BC.

Guest user
Not applicable

Confused

Has anyone had a similar experience to me? I was diagnosed with high grade DCIS with 9mm tumour. Following WLE I was told that the tumour was in fact 19mm (over twice as big) and was a mixture of high/intermediate grade. I am now in the middle of a 15 day course of radiotherapy, which I am finding not only exhausting but isolating. I saw a radiographer yesterday for a review and she turned round and told me that I do not and did not have a breast cancer? My surgeon told me it was a definite cancer and offered me mastectomy or WLE followed by Radiotherapy. I am glad I went for the WLE because as it turns out a mastectomy was not necessary but I am confused because I feel the offer of a mastectomy for a non-cancer was a bit drastic?? (I know DCIS can be described as early or non-invasive, amongst other things. Also, radiotherapy seems a bit drastic if I did not have cancer in the first place? Had I gone ahead, would they then have told me I did not have a cancer? I am also waiting to hear if it was ER positive and surely if it wasn't a cancer they wouldn't be able to do this test??