Full diagnosis on Firday - what questions to ask?

Hi, I was diagnosed Friday 30th of June with DCIS intermediate but they didn’t have the full results of the biopsies so going this Friday for the full diagnosis and treatment options.

From your experience, which questions would you recommend that I ask or which ones were critical in really getting the full picture?  I’d rather know everything!

Hi Stephanie

 

As a recent fellow DCIS sufferer, I am sorry to see that you are joining the ‘club’.  I was like you and knowledge was my way of keeping in control of the situation.

 

I note you say “biopsies”.  Is that a slip of the tongue or does it mean more than one was done?  For example, two locations/multi focal? Both breasts?  Do you know what size it is?

 

To be honest, you might not get much more information if it is just DCIS that they believe they have to deal with.  Size/location would help in determining whether a lumpectomy would leave you with a reasonable cosmetic look and impact on symmetry with your healthy boob.  Radiotherapy is likely to be a given with lumpectomy.  These are questions that you should be considering.

 

If there is anything nastier there, treatment plans will be tailored to suit you specifically, e.g hormone responsiveness.

 

Have you been given any information leaflets yet?  They can be downloaded from this website and cover a wide range of subjects including DCIS, lumpectomies, radiotherapy, etc.  They are certainly worth a read prior to your appointment.

 

I hope all goes well, if you need help with anything else, feel free to ask.  I am 5 weeks post surgery and quite frankly, amazed at how I am doing! ?  I opted for a mastectomy for various reasons but it was absolutely the right call for me after lots of research and questions.

 

Ezzie. X

 

 

HI Stephanie77,

 

In addition to Ezzie’s comments, it would be good to ask if they intend to do a sentinal node biopsy. The sentinal node is usually in the armpit area (where the lymph glands filter to) and they may want to remove it to double check if there are any signs of spread into the lymph nodes. They carried this out at the same time as removing my lump, they take an area around the lump (know as a margin) and then 2 weeks after the operation I got the results of the sentinel node biopsy and the results as to whether the margins (around the cancer) were clear. At that stage they informed me what follow up treatment could/should be provided.

 

The majority of breast cancers are estrogen positive (which in laypersons terms means that type of cancer feeds off/is encouraged by estrogen). Generally it is considered a positive thing if estrogen positive since there are various medications they can provide which effectively act as estrogen blockers for the cells in the breast, thereby reducing chances of reoccurance etc. This is known as hormone therapy. 

 

The oncologists usually give you all the diagnosis info they can at the relevent stages, plus the breast care nurses should provide you with various booklets explaining the diagnosis and various potential treatments. If you have queries at that stage loads of us on the forum to help with info/support etc. I think the oncologists have a difficult job balancing how much one individual wants to hear as compared to another individual.

 

I hope the meeting with your oncologist goes as well as it can in the circumstances. Happy to help if you have some q’s or want to shout, or quietly scream after!

 

Seabreeze (3 years on)

XXX