Hi there
Was wondering if anyone had any information for me
I had a breast cancer lump 14mm and a suspicious cyst in my right breast so had a mastectomy about 2 weeks ago. When I went for the results yesterday I was told that when the whole breast was tested they found an 8cm x 5cm area of DCIS which was benign at the moment , this hadn’t been spotted on either the mammogram or ultrasound.
I am now really worried that I have this in the other breast and it hasn’t been detected. They have advised me to start my chemo in 3 weeks and “wait and see”. They said I can have mammograms yearly, as I have seen on this section DCIS can turn cancerous quite quickly and the last one didn’t detect it.
I have asked to have the other breast removed and they said they would have no problem in doing that, but to wait until after I have recovered from chemo, at least 6 months.
My concerns are as follows
Would DCIS be killed off by chemo or would it remain unaffected ( am I wasting the chemo )
If they couldn’t see the last large area how will they spot another one.
Are they waiting until it turns into cancer before treating it.
I am quite upset about it as I thought that the chemo was the final “mopping up” of cells , but now feel that this could turn cancerous after the chemo. Added to the fact that I am definately going for the mastectomy afterwards, although I would have rather had it before the chemo.
My husband was with me when we got the results and we both thought the same as we left.
TIME BOMB
Any help or information would be a great help
Thanks
Ann
xxx
Hi Ann,
I had high grade DCIS in my left breast, which was spotted on my three yearly mammogram. I had my mastectomy last year and my oncol said he was pleased that I had, had the Mastectomy because there were some low grade DCIS cells which weren’t picked up on the mammogram.
There was nothing in my lymph nodes, so I haven’t had radio or chemo. I am now on Tamoxifen for the next four years.
I was told that I wouldn’t be having a yearly mammogram, that it would be every two years, as - I was told - nothing would be likely to develop within the year of having my last mammogram…ie:2007.
At the time of having my mammogram and then follow-up consultations as to whether I should go for the Mastectomy - though they didn’t really give me much choice - I was told that the DCIS is contained within the milk ducts BUT, could break out of the MD’s BUT they didn’t know when…they told me it could be years down the line…
To be safe, they took away the breast completely.
Again, they told me, the Tamoxifen would / should, kill off any other signs of DCIS either within the scar tissue or in the remaining breast.
I don’t think you are sitting on a time bomb and if they are offering you yearly check-up’s and chemo, well it sounds to me like you are in very safe hands.
Try not to worry. I am a year down the line and getting on with my life and trusting the specialists.
I hope I have maybe answered some of your questions. Have a look in cancerbackup.org I’m sure you will find the reading there will put your mind at rest.
Take care
Linda x
Hi Anndi,
Sorry to read that you are going through such a tough time at the moment.
It is not possible for me to give you a detailed reply here on the forums, but it is not usual to have chemotherapy for a diagnosis of DCIS. I would suggest contacting either our free phone Helpline on 0808 800 6000, and speaking with one of our trained helpliners or nurse. Or alternatively you would be very welcome to email into our Ask the nurse service, and they would be able to give you personal response to your questions, the direct weblink is;
www.breastcancercare.org.uk/content.php?page_id=119
You may also want to speak with your Breast Care Nurse, as she will be able to give you on going support
best wishes
Tara
Clinical Nurse Specialist
Hi Tara - I had dx of DCIS in Oct. 2007 and was told it was non invasive and was contained in my milk duct, I was advised to have a masectomy, which I did and reconstruction at the same time, taken from my back in Dec.2007. I was only in hospital 8 days. and have come through it well, I feel fine, but after having dressing done on a daily basis for 3 weeks, including Christmas Day Boxing Day, and my check ups at the hospital where the operation was carried out, now all my appointments have finished I suddenly feel " out on a limb" My results of my masectomy was given to me on the 13th Dec, which was all clear including my lymph glands, I havn’t had to have any chemo or rad, nor Tamoxifen. I had been taking paracetomol, and diclofenac three times a day, now I just have one a day. I have had to have a check up with a respiratory consultant, because on my pre-med Xray it was discovered I had a slight shadow on the right lung, the same side as my masectomy. Last Tuesday I was discharged. My Xrays (four in all) have shown no change. I am to see my Plastic Surgeon end of July to have my left breast “uplifted” to match the right, and a nipple added. All the treatment I have received both from my hospital and own GP have been excellent no complaints at all, I have received such praise from everyone, for my positive attitude and have felt really well BUT now I am confused, reading some comments on the forum, is DCIS cancer ? Will it come back? It has been mentioned that I needn’t have a mammogram until three years, but should I request one in 12 months? How I am feeling at the moment, is this to be expected? Is it because I have handled everything so well in the beginng? So am I a “downer”?
Hi
I was dx in February 2007, with lobular and ductal invasive cancers in my right breast as well as dcis, 2 of 4 lymph nodes were positive. One of the tumours and the DCIS had not shown up on any mammogram, biopsy etc. I immediately opted for a bi-lateral mastectomy as my Mother had had breast cancer. When the path reports came back, it showed that I also had an area of DCIS in my left breast. How pleased I was to have had both removed and when I said so, the surgeon nodded and said, yes you were right to have both removed. I then went on and had chemotherapy and radiotherapy to right breast area only. Am now on Arimidex for 5 years. Good luck with your decision - I know I haven’t regretted a single day of it!
Sharon
Hi Grateful
DCIS is classed as pre cancer, but it will at some time turn to cancer, they seem to treat it in the same way. I think if you have had a mastectomy with clear margins it is very unlikely that it could come back. I am certainly not worried about the breast that I had reconstructed, just the other one. It seems to be sometimes difficult to spot on a mammogram, which is why I am concerned. Oddly enough my consultant had to argue with the rest of his team for them to check me yearly.
What have they said about the shadow on your lung?.
Ann
xxx
Hi Sharon
I am going to have a Mast after the chemo as they won’t do it before, but what if like you there is DCIS or tumours would I have to have chemo again do you think?. They won’t delay the chemo. If I had have known about the DCIS I would have had both breasts removed.
What do you think?.
Thanks
Ann
xxx
Hi Ann
Thank you for your comments I must admit I feel a litle happier now. I was discharged Tuesday regarding the shadow on my right lung. It was explained to me at my previous appointment, which was the first that I had with the respiratory consultant, that it was quite a common thing, and he could more or less guarantee that if he X-rayed 20 people off the street he could probably find at least 10 people with a shadow on their lungs. He hasn;t said it but I have heard that this shadow could be scarring from an earlier condition, such as if you had had bronchitos or perhaps smoking could cause it. Apparently I did suffer badly when I was an infant with bronchitos. Anyway I was told Tuesday that the shadow was exactly the same as when I was X-rayed in November. 2007. Thanks to this forum I have just printed out Dr Peter Harvey’s article on "After the Treatment Finishes - Then What? which I have found very interesting. I don’t no whether you are like me Ann but I don’t like asking to many questions to my consultants, for fear they think I am being a nuisance. Especially as I am 67. My thanks to you, I am finding this Forum so supportive.
Hilary x x
Hi Hilary
Yes like you I don’t like being a nuisance,I do ask questions but if I have asked them once and they have answered I don’t like to ask again. I don’t want them to think I am unhappy with my care and treatment. They have all been fantastic so far, but I do need to look out for me at the end of the day.
If the shadow has stayed the same it sounds as if they know what they are doing, as long as they keep an eye on it in the future.
This site has also been a godsend for me at some really low points after finding out, I found the ladies here kept me going and stopped me going to pieces.
As for the mammograms as you didn’t have it in any of your lymph glands involved they probably don’t expect it to come back/speead. It might be worth asking for yearly ones at least then they will explain why if they don’t think you need them. They were going to give me three yearly ones but as they hadn’t spotted the DCIS my consultant argued for yearly ones, which they agreed to I had 1/6 nodes involved. I do plan to have the a mast on the other breast early next year, so that will probably not be needed anyway.
Lovely to hear from you, keep in touch if you need anyone to run things by.
Take care
Ann
xxx