Hi,

Get on the phone to the breast care nurses with your list of questions and get your answers. 
I was diagnosed with a carcinoma and DCIS and when I spoke to the radiologist consultant about it she said 'oh you don't need to worry about that, that's just sloughed off skin cells!' I never really understood that because it was 6/8 HER2 positive and the carcinoma was 3/8 which they called negative but that was the reason I had 7 rounds of chemo!

I believe there was a report about women going through treatment for DCIS which was unnecessary but I can't remember the details! Have a look and see if you can find it. 
I hope you get your answers, call them or McMillan and anyone else that can put your mind at ease. You'll be ok, sending a hug x

HI Barbs,

A very warm welcome to our forum.

I am so sorry to hear that you have been left in limbo like this. Have you had your pathology results back yet from your surgery? This is usually when your team will discuss everything with you. I agree with Tian - write down a list of all your questions and phone your breast care nurse.

Please keep in touch and let us know how you get on. We are always here for you.

Kind regards,

Jolamine xx

Try not to worry. Easier said than done. 
I had no idea till a surprise mammogram showed anomaly. I was really confused as all the doctors said it's probably nothing and yet still invited me in for yet another appointment. I was transferred from one hospital to another during the process and never saw the same nurse or doctor twice. 
they told me it was DCIS shoved a leaflet into my hand and told me I had a lumpectomy the following week. 
it wasn't dcis it was infiltrating carcinoma.. I've been on tamoxifen and it's been 5 years and have yearly mammograms. 
can I suggest you talk with breast cancer charity and cancer research uk? They are excellent and knowledgeable. 
I'm in a hard place right now as I'm undergoing biopsies for endometrial thickening and enlarged uterus post menapsuse. It's worrying but please please go back to your Gp the charities anyone who can tell you what it was what it means and how they will help you. 
it's frightening but please stay strong 

Thank you so much for your help and advice x

Unfortunately the breast care nurses only work Mon-Fri but I did speak to a lovely nurse from the McMillan cancer care team today.  She was very helpful and she helped me address some issues and questions that I could have for the breast care nurse on Monday morning She also helped with an unrelated issue that she noticed, so thanks again xx

It's reassuring in a way to know that I'm not alone in uncertainty.  
It is true to say that charities such as this, and the McMillan Foundation are just brilliant!  I would probably be a wreck without their help.  I'm sorry that you have had such a bad experience x

I am not normally shy when admitting that I need help, and I have experienced similar issues such as yours.  In regards to the trouble with your womb, please let the consultant know that you are concerned.  If they are reluctant to help, please speak to your GP.  If you really aren't happy please contact PALS at your local hospital.

Thanks for your reply

I went through a mammogram, needle biopsy, followed by a lumpectomy for the mass within my breast.  I was told the results of this was DCIS. She said that she had asked the question of radiotherapy, but was told by the lab that it wasn't necessary.  She said that she was confident that it had been removed, and handed me a leaflet explaining what it was.  She added that some of it was relevant but not all of it.  
I should have asked her questions, but I think that I was in shock if I'm honest.

 I have spoken to a cancer care nurse at McMillan this afternoon who reassured me that it was a good sign that radiotherapy had been ruled out at this stage, but she did urge me to speak to the breast care nurse at my local hospital xx

HI Barbs,

There are different grades of DCIS ranging from early non-invasive to invasive, and it sounds as if yours is about as good as it gets. Some consultants will refer to this as pre-cancerous. Your mammogram will have shown up the lump, but the biopsy diagnoses the type of cancer, if any that is present. Most people with DCIS will have radiotherapy. Your biopsy will also have looked at the stage and grade of your cancer. What grade were you told your cancer was? This describes the potential for the cancer to spread and how similar the cells are to normal cells - presumably yours were a low grade, which is why the people at the lab didn't feel that you needed radiotherapy?

Most of us fail to ask pertinent questions at the time that we are given our results. This is a time of high anxiety for us all and we also find that there are a lot of new medical terms to deal with. It is all rather overwhelming and we tend to head off home, before we think of all the things we want to ask. I am glad to hear that you spoke to the care nurse at MacMillan and I'm happy to hear that she was able to reassue you that this was the acceptable pathway for you.

I would however agree that it is still worth talking to your specialist nurse at the hospital, as they have access to your medical and pathological details, as well as their cancer experience. This puts them in the best position to put your mind to rest. You will find it helpful to draw up a list of all your questions before you speak to her.

Please let us know how you get on.

Kind regards,

Jolamine xx

Hi Barbs, I am being treated for high grade (grade 3) DICS, 3cm. I saw the oncologist last week - very good at explaining why I was/wasn't having certain treatment. Because I am 50 and it is high grade I am having a short course of radiotherapy. He said if I was older and it was lower grade, they wouldn't recommend radiotherapy. He explained that the recommendations are all evidence-based ie is the benefit likely to outweigh the risk of side-effects? Like the others say, you should ask any lingering questions to put your mind at rest xxx

Hi

Thanks for taking the time to reply to my post.  Unfortunately no one has given me any grading or my diagnosis, which like you said can leave your mind open to different scenarios.  I hope that you get well soon, and you are in my thoughts.

I do feel angry that I wasn't told more than just a diagnosis if I'm honest, but I will save that and use it constructively when I speak to the breast care nurse tomorrow.  I will be writing my questions down carefully before I speak to anyone regarding my diagnosis, and hopefully I will be more relaxed about my future Take care xx