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76Ag
Member
since
17-07-2016
28
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6
Hugs
17-10-2017
07:22
An enlarged lymph node showed up on my mammogram and ultrasound but nothing showed in breast. A biopsy showed cancer in the lymph node so had MRI of breasts but again no tumour was found and a CT scan showed no spread of breast cancer anywhere else. Had an axillia clearance 12 days ago and got the results today. 5 out of the 11 lymph nodes taken had cancer in them. I’ve now to see the oncologist but the consultant told me chemotherapy, radiotherapy and hormone tablets have all been recommended as well as a mammogram every 6 months to keep an eye on the breast. Has anyone else here ever had the same diagnosis as this?
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16-11-2016
11:32
1 Hug
I had a WLE followed by a re-excision for high grade DCIS in July. In September had 3 weeks x 5 rads . Chemotherapy is not given for DCIS as it is not invasive. I have first visit back with consultant next July when I'll get a mammogram then mammograms annually. Hope this helps you Boobywoo x
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27-10-2016
10:48
I had already read articles about whether or not DCIS is over treated so wasn't really surprised about his opinion on the matter but what did confuse me was the difference in the recurrence risk given by the first and second oncologist.
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27-10-2016
10:25
1 Hug
Hi Ali49. The radiotherapy was fine. I used Aloe Vera when I got home after the radiotherapy and E45 at night. My skin got slightly pink towards the end of the 3 week session and a little bit more pink in the following 2 weeks. Now 3 weeks after finishing my skin is practically back to normal. Also I never experienced any tiredness. The only other symptom was a very slight itch around the nipple. Hope all goes well for you.
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26-10-2016
10:21
I had a WLE in June followed by a re-excision after being diagnosed with high grade DCIS. The first oncologist I saw after the op to discuss radiotherapy told me there was a 30% chance of recurrence without radiotherapy and a15% chance of recurrence with it. The second oncologist I saw yesterday post my 3 weeks of radiotherapy said there was a very low chance of recurrence and when I told him about the 30% /15% risk quoted by the previous oncologist he said these figures were out of date and quoted about 5% after radiotherapy. He then went on to say he believes DCIS is over treated and if he had his way surgery and radiotherapy would not be given unless the patient was under 40 but unfortunately policy dictated the treatment he had to adhere to. I would like to believe what I was told yesterday but must admit to being a little bit confused.
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08-10-2016
11:37
1 Hug
Glad you were given such a low chance of recurrence Jas58. Sounds as if your DCIS wasn't high grade. Best wishes for your radiotherapy.
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07-10-2016
10:13
Hi Eli. I just finished my 15 sessions of radiotherapy 2 days ago and found the treatment fine..The only after effect I have is a slightly pink boob. I was also diagnosed with high grade DCIS and had a WLE and a further excision to obtain clear margins. My oncologist said that radiotherapy halved the risk of recurrence from 30% to 15% so was obviously recommended. The only thing I'm still trying to push to the back of my mind is that 15% risk. Best wishes to you for the rest of your treatment.
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30-09-2016
03:26
1 Hug
Hi Cla 46. Hope you are having a better day today. I know how you feel about about thinking every little bump, lump etc is going to make you panic. I think most people who are dealing with bc are exactly the same. I know that I am. That and the constant thought of a recurrence which I am trying to put to the back of my mind. It's only when I come on here and read about other people's situations, it brings home that I'm not the only one having to deal with what's happened and I appreciate some are having a much tougher journey than me.i have just had my 12th rads out of 15 today and am looking forward to it finishing so I can try to begin to be more positive about the future. Hope everything goes well for you.
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29-09-2016
11:03
Hi Helen13. I'm feeling ok. Only 4 more rads to go and so far haven't had any problems. Hope your rads go well when you begin. The aluminium free deodorant which I got in Tesco is called BIONSEN and Boots also have it. I also have one from Forever Living which a friend gave me. I was worried that just rads as follow up treatment wouldn't be enough because of the high recurrence risk of high grade DCIS but I have read articles that say hormone treatment isn't usually prescribed for DCIS as it is not thought to be of any benefit.
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29-09-2016
11:20
Hi. I'm going for my 11th out of 15 rads today and so far it has been fine. I am in and out of the treatment room within 10 to 15 mins and the staff are all lovely. I was told I could use deodorant so I bought a non aluminium one although I wasn't told to. Use of creams was not mentioned so I asked to be told they didn't recommend them as some could cause more irritation and they would advise which cream to use if they felt it was becoming necessary to use one but I could wear one my skin was used to if I wanted. I am not on any tablets as in my area hormone receptors are not tested and if they had been I'm way too old to have been given them. Are there any other ladies like me who had a diagnosis of high grade DCIS and have had 2 WLE procedures then only radiotherapy as a follow up?
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21-09-2016
10:32
Hi Ali49. Glad everything went well with your op and you found you had been worrying needlessly about the anaesthetic. Hope your results in two weeks are good. Let us know. Agnes
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18-09-2016
09:10
Hi Ali 49. Hope everything goes well with your op tomorrow. The actual op is nothing to worry about and it's all over in the one day. I had no pain at all after mine and you are well looked after by everyone involved in the procedure. i had my WLE in June and just started the first of 15 lots of radiotherapy on Thursday. I think what has annoyed me is that the first doctor at the hospital told me all the better facts about DCIS i.e it is not life threatening, is pre- cancerous, is non invasive and has a very good prognosis. What she omitted to say was even after it was removed it could return as DCIS or invasive ductal cancer and there were grades of low, intermediate and high which affected your risk of recurrence. After the WLE the consultant, who I had rarely met and who didn't perform the op, said " we got it in time" and handed me a short report with high grade DCIS on it but offered no explanation at all as to what high grade meant. I then was left to find out all about it myself. What I'm trying to say is when the initial DCIS diagnosis was given to me I wish I had been given all the facts about this condition and not left to find them out for myself. I am grateful that my diagnosis was not worse and I realise that at the back of everyone's mind is the thought of recurrence but you just have not to stress about it and get on with life. Best wishes for tomorrow and hope to hear all has gone well.
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17-09-2016
11:32
1 Hug
Does anyone who has had a WLE followed by radiotherapy for high grade DCIS think they might have opted for a mastectomy if they had known the recurrence risk was as high as 15% ( some reports say as high as 19% ) half of which could be invasive whereas with a mastectomy the risk of recurrence is as low as 2%? I know a WLE is given when the DCIS is small and is not widespread and the mastectomy has to be given for various other reasons and might be refused if the surgeon doesn't think it's necessary in your case. I think I would have preferred to have the different grades of DCIS explained to me and their prognosis when initially diagnosed instead of being led to believe DCIS was nothing much to worry about.
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14-09-2016
10:40
Hi Cla46. Glad your results were positive today and no more surgery is required. I am starting 3 weeks of radiotherapy tomorrow after a WLE and a re-excision for high grade DCIS. My oncologist said there was a 15% chance of recurrence. Is that what you were told too?
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08-09-2016
04:12
1 Hug
Hi Jan. Glad your op is over and you're not feeling too sore. Hope your results are good when you get them. I had my planning scan for radiotherapy on 30th August and the 15 sessions I've to get start a week today. Think 12 weeks between my re-excision and the start of the radiotherapy is a bit long which I must admit worried me a wee bit too but I am trying to be a bit more positive about everything. I really admire all the women on here who have had to endure so much more than me and still have such positive attitudes. Take care, Agnes
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02-09-2016
10:42
Hi jango47. Glad your operation is over and you're feeling ok. Thanks for answering my query. DCIS was portrayed to me as nothing to worry too much about and I was told only about the "good" parts of the diagnosis. Not until I had read more about it and joined forums did I realise the picture wasn't quite so rosy. Some women on the forums have had to have mastectomies, some needed chemotherapy because some invasion was found and some have had radiotherapy. Add to this the worry of the chance of recurrence. I have gone from relief that my diagnosis was only DCIS to continual worry that after my WLE for 10mm high grade dcis and a further re-excision to obtain clear margins and a follow up of 3 weeks of radiotherapy I could have a recurrence. Part of my worry about it recurring is the fact that at my age I might not be fit enough to have surgery which would be even more major than the previous one. Sorry about the rant Jan. Hope you continue to make a good recovery. Take care of yourself xxx
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31-08-2016
08:37
Since being diagnosed in April with DCIS and being told it was precancerous and very treatable so I shouldn't worry too much my mind has been in a whirl. I have gone from a feeling that I was very fortunate to constantly worrying now that I have found out more about it. Yes the survival rate is very good but there is a 25-30% chance it might recur either as DCIS or invasive DCIS if you have a lumpectomy. Some women have to undergo a mastectomy because of the size or spread of their DCIS and some women have to have chemotherapy because some invasive cancer has been found as well as DCIS. After a WLE and a further re-excision to obtain clear margins I have just had my planning CT scan and now have to have 3 weeks of radiotherapy as the pathology report said high grade DCIS which is the one most likely to recur. The oncologist said with the surgery and radiotherapy the recurrence risk was now 15%. Along the way there has been all the worry waiting on results from biopsies and from one operation then another, an oncologist visit, a CT scan and now the prospect of 3 weeks of radiotherapy. I know lots of other women have been given a worst diagnosis and have had to endure much worse treatment but I feel a DCIS diagnosis is also very stressful and I only wish I could stop worrying so much.
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28-08-2016
10:09
Hi Jan. Hope all goes well with your op onTuesday. It's unfortunate you need a mastectomy after having your WLE and radiotherapy just 2 years ago. Hope you don't mind me asking but why did you have the WLE? I had a WLE and a re-excision for high grade DCIS in June and I've shortly to have 3 weeks of radiotherapy. I must admit it worries me that there could be a recurrence in such a short time.
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28-08-2016
10:07
Hi Jan. Hope all goes well with your op onTuesday. It's unfortunate you need a mastectomy after having your WLE and radiotherapy just 2 years ago. Hope you don't mind me asking but why did you have the WLE? I had a WLE and a re-excision for high grade DCIS in June and I've shortly to have 3 weeks of radiotherapy. I must admit it worries me that there could be a recurrence in such a short time.
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