Hi dbusby,
I am outraged, to say the least, that a cancer surgeon, or indeed any doctor, can speak to you in that manner. You can ask, or demand, as I did with an arrogant, patronisiing and downright rude Oncologist, to see another surgeon who will explain your path results and any fruther treatment.
Unforunately I had not found this site until well into chemo, but a friend in the US, whose husband has lung and kidney cancer, told me to get a copy of my pathology report. When I went for the results of my 2nd surgery, total axillary removal, I asked my surgeon for a copy of my pathology report. His eyebrows went up, didn’t say a word, just went and got me a copy right away. Unfortunately, he didn’t go through with it with me. When I got home and looked at it, I thought I was reading a foreign langugage, which I suppose it is. That was when I started researching my own bc. I was surprised to see the words “DCIS” on the path report, which of course I didn’t understand, along with most of the report, and googled it. Not only did I have a 2 cm invasive ductal tumour, but “associated nuclear intermediate grade DCIS, comedo and cribriform”. Duh? surgeon didn’t tell me this! The report should also give you stage,grade, ER, PR and Her2 status, plus size of tumour, and number of lymph nodes removed, and whether they are benign or malignant. DCIS and vascular invasion should also be noted. Mine also gave a Nottingham Prognostic index number, although I am not sure if all hospital pathologists do this.
This is probably the most important piece of information you can have, as it will dictate your future treatment (chemo, rads, hormone therapy, if necessary, etc.).
That’s when my problems with the Onc started - I by then knew DCIS meant “Ductal Carcinoma In Situ” and at my first appt with him, chosen by my bc surgeon as the “brightest Onc who deals with bc and you have complex other health issues”, I asked him about it. He said it was pre-cancer, I begged to differ as clever clogs me did Latin at school some 50 yrs ago. Carcinoma is cancer, is it not? It’s just that it has not spread outside the ducts. Well, he got up from his chair, mad that I had challenged him and said: “Do you want to continue this conversation:” I should have said: “Not with an uncaring prat like you”, but then I suppose naively, asked him if he had treated a patient with concurrent bc and Crohn’s to which he answered: “No, but I have treated one with psoriasis”. Not quite apples and apples. As he had already told me in no uncertain terms that I had to stop my current chemo, methotrexate, for Crohn’s otherwise I would die of septicaemia (just what I needed to hear in that vulnerable position) I asked how he would treat a flare of Crohn’s when I was on FEC chemo, he blithely replied: “We’ll cross that bridge when we come to it”. Er, well no, we won’t, I thought - has he ever had to wear incontinence pads, doubled up with abdominal pain, live on the loo for hours, be hospitalised with severe rectal haemorrhaging? Methinks not. I burst into tears and fled the room.
I felt I could not go through 4 months of FEC chemo, no methotrexate to hold my Crohn’s in remission, a doctor who felt he was being challenged if I so much as opened my mouth, and was in despair. I knew I had to had the FEC as the cancer had spread to my axillary nodes, but couldn’t bear the thought of having to see this uncaring doctor each time I went to the Oncology Suite. I contacted my oh so different gastro, who blinds me with science every time I see him but he ssaid he could not intervene in my treatment as cancer is life threatening, Crohn’s usually not. He too had never treated a patient with concurrent diseases.
I postponed the FEC chemo until I got my head around what was happening and emailed every major hospital in the US I could think of, and the dedicated IBD hospital St. Marks in Harrow for advice. They all responded but had no experience with my conditions, except for one gastro Professor at St. Marks, who wrote a normal letter, copying my gastro, Oncologist and GP, with a plan and said I must discuss his letter with both the Onc and gastro before going ahead with FEC. So, I decided to have the FEC and when I went for my first treatment, I asked the receptionist if I could see another Oncologist, anyone but the one assigned to me. No questions, no fuss, told to go and sit down. Within 15 mins I was taken to see a lovely young female GP who worked part-time in the Oncology Suite one morning a week - my luck changed!. She didn’t ask why I wanted to change - these doctors do stick together - just said: “Let’s sort you out”. We decided on a small dose of dexamethasone and elemental nutrition - no food for 4 months, just 3 cartons a day of Fortijuice, and although it was difficult, with faecal incontinence, I obviously survived.
I am sorry for this long story, but I was appalled at my initial treatment by the Oncologist but had no idea what to do in the beginning, and through his attitude,nearly did not have the FEC chemo I needed.
I believe every hospital must have a PALS service (Patient and Liaison) and if you are unhappy with any of your doctors (surgeons, physicians) they are a brilliant place to go to get help. We had a need to get help from them when my husband had been waiting 8 months for an “urgent referral” by his vascular surgeon to a neurologist. The PALS lady sorted it within an hour.
I have had Crohn’s disease for 38 yrs and have a long history of in and out patients treatment at various hospitals in England, Spain and once, in the US so I am not really daunted, but for someone who has perhaps never been in hospital except to have children, and especially being diagnosed with a life threatening disease, I can only imagine how frightening it must be.
This post is probably too late for your appt today but at least you can now ask your bc nurse for a copy of your pathology report, if you don’t already know about it, and get the information you need before you make any decisions about further treatment.
I do hope your news is good today and the surgeon got clean margins (another question to ask) and the lymph nodes are benign.
Do come back and let us know how you got on, and how we can help you further.
Take care,
Liz.