Paget's disease please give guidance

[baytat]

Dear all,
After living with these symptoms for 3 years without any impact or change in lump, breast size, shape…etc I went and had a FNAC and never in my thoughts had I thoughts of anything negative.
I did the FNAC and the report says suggestive of highly invasive carcinoma. (I do not have the result to write it exactly).

I did a chest x-ray that said
A well defined round shaped, opacity is seen projecting in the right lung base in the P.A view which is not well appreciated in the lateral view mostly representing the shadow of the nipple
Clear both lung fields and costophernic angles
Normal cardiace size and configuration

I did an ultra sound that said:
There is R breast well defined hypoechic smooth margins 2.3 X1.6 with horizontal merit. Picture of benign lesions. Free axillary’s lymph nodes
Other abdomen, pelvic and stomach pictures are clean.

I did a full blood test and urine which all came normal and clean too.

My treating doctor is insisting that I do not have IC. The other doctors whom I traveled to, believe I need to act quickly and do the surgery… I am caught by surprise; I do not know what to do and do not know where to take it from.
Therefore I need the support of all the readers in this forum to help me and guide me, especially those who have passed by this experience.
1. How come I have an IC and live with it for 3 years without causing any symptoms in my breast that cause me to worry to that extent.
2. I had read that there are many cases of pathology reports suggesting invasive carcinoma but when done on excision biopsy it was benign. What are the chances of false positive false negative FNAC.
3. I had read about other disease mimicking paget’s disease to a great extent, that if not carefully monitored could lead to unnecessary surgery such as: syringmatous adenoma of the nipple, or papilloma, or nipple adenoma. When I spoke to the dr. about them and asked him, he said he never heard of this, and this is very rare. Does he mean I do not have chances for benign results.
4. How can we compare the different findings of the U/S and the FNAC and the chest X-Ray?
5. If diagnosed with paget’s what are the treatment options I have. Is it lumpectomy, or mastectomy based on mass size given aboce.
6. What are the survival rates for paget’s disease.
7. What other treatments would I have: chemo or radiation..etc
8. Any thing that I need to know. I was told about exercise, nutrition and vitamin E supplements, and anti-oxidants is this true, has any cancer treating centers spoke about this and their positive impact on treatment.
I look for the support, patience, guidance and assistance from all of you. Please do not hesitate to share with me any piece of info that would be useful. Thanks

[japdip]

To me it means that you very likely have Invasive Cancer of the breast; especially if all the findings (film & biopsy) agree. I urge you to proceed as soon as possible with a Surgical consultation for evaluation as to what type of surgery will best serve your present circumstances and also possibly with an Oncologist for pre or post-op treatment.   Regards .....

[baytat]

Thanks. I got my FNAC report which says:
Gross pathology:
an ill defined firm mass at the right retro-areolar region, with ulcerated crusted nipple. The nipple was dry. The mass was aspirated for cytology. The aspirate was moist.
CYTOLOGY:
Smears of the aspirate showed cellular pattern, made up of irregular clusters of loosely cohesive ductal epithelial cells with moderate cellular atypia. Sporadic similar cells are also seen. Few inflammatory cells are observed.
DIANGOSIS:
Right retro-areolar breast mass, fnac of highly atypical ductal cells favoring cytologic malignancy suggestive for invasive duct carcinoma.
comment:
1. it is a rule that cytologic malignancy is to be documented by biopsy and tissue diagnosis with or without frozen section
2. Please correlate with the clinical radiologic findings and serum level of tumor markers

What does it mean

[japdip]

To answer a few of your questions :   1: breast cancer has FEW if any symptoms for years other than a lump that may be present whether it is palpable or not. You do say that you had symptoms for 3 years .... anything different/new involving the breast should always be investigated immediately! I'm not quite clear as to why you think you have Paget's ..... were you told that? According to your report it was diagnosed as highly suggestive of Invasive Carcinoma. From your post I see that you have been doing some in depty research which is something I feel is better left to the Medical Professionals. Your role would be to act on the recommendations of the Radiologist and/or Surgeon / Breast Specialist without delay. First line treatment for any type of cancer is usually Surgery - Chemotherapy - Radiation depending of course on the involvement of the malignancy. Not all these treatments are necessary in every case. All the other things you mention certainly can't hurt but CANNOT treat, cure or arrest the growth of the cancer. Biopsies are very rarely wrong and if they are it's usually in the reverse: showing a benign finding when actually there is a malignancy. Survival rates are dependant on too many factors to even venture a guess that would apply to an individual circunstance. Regular X-rays, blood and urine tests are NOT a part of a cancer diagnosis.... Mammogram, Ultrasound and Biopsy are the diagnostic tools that are used in diagnosing breast cancer.   Regards .....