I am in total agreement with Mole (our guru!). I had IDC and DCIS, and lymph node involvement. usual 2 surgeries, chemo and rads. At no time did my bc surgeon say I “might” be cured, he in fact said: “Liz, you will probably die from Crohn’s rather breast cancer as we know so much about bc, so little about Crohn’s”. I didn’t know whether to laugh or cry! He has never used the word “cured” as I don’t think it is in the lexicon of informed cancer doctors. He just said that at Feb 2007 I was NED (no evidence of disease). Well, no cancer, but got big problems with my weekly chemo for Crohn’s with grossly enlarged red cells, but that is another problem not appropriate to discuss here, unless there is anyone out there with both bc and Crohn’s, whom I would love to share experiences with. I am grateful that my bc surgeon always asks how my Crohn’s is doing, as he knows I have weekly chemo. I tell him I am doing fine. I am a supreme optimist, probably misguided.
At my last annual review in February I asked how long I will be monitored, and he said for 9 years from dx. If I have any unusual symptoms he told me to ring my bc nurse for an appointment with him. That’s fine with me, grateful if I make it that long at 63 yrs. As far as the Onc is concerned, I am off the radar - he discharged me after I finished rads 4 yrs ago. I did however manage to upset his stats when I went privately last year for an HER2 test as it was not done when I was dx 4 years ago. He flatly told me that even if I was HER2+ he would not prescribe Herceptin, as I was too long out of chemo, and ideally, he said, Herceptin should be given with chemo, or at least within 6 months. Wish I had printed off some of the responses on the USA bc.org site, where women are getting Herceptin long after being diagnosed. The only solace I got from him was a letter stating I was HER2-, and with ER+, this was a great prognosis!.. I nearly choked at his patronising attitude. However, thankful I was HER2-
I guess because I had lymph node involvement (4/18) I had bone,liver and lung scans immediately after my axillary resection. I didn’t ask for them, and couldn’t have as I was absolutely clueless then. Thankfully, all were clear. Only found this site when going through rads.
I had severe left hip pain about 2 yrs ago and I was worried it was bone mets - went to my GP, he sent me for a normal x-ray at a local community hospital, not the breast care centre where I am normally treated. GP said x-ray was normal. I told him the pain was so bad I couldn’t sleep at night - every time I turned over, the pain came back and woke me up. He sent me for 3 months of weekly physio at a local community health centre. Pain eased a little, but not much. Then I went for annual review with my bc surgeon and told him of the hip pain. Within 2 days I had a bone scan which found I had severe arthritis of both hips, feet and hands, and the surgeon wrote to my GP to prescribe bisphosphonates and Calcichew/Vit.D3. He also wrote to my gastro requesting a DEXA bone density scan, which I had 3 months later, which showed severe osteopenia of my bones. This was not due to cancer, but 30+ years on steroids for Crohn’s. The pain has virtually gone away now, due to taking the bishopshonate. I am just so grateful that I have such a caring bc surgeon - he is very shy and at first didn’t say much, almost blushing, but after he had a stroke last year, is now back at work and has a quite different attitude. Takes one to know one I think.
3 months ago I broke a metatarsal bone in my right foot - all I did was stand up from the dining table at 9.45 am , so I was not inebriated. My leg had no feeling and I fell on the floor. It was a Sunday, so didn’t know the local community hospital was open for minor injuries. I spent the day and night in agony, hubby telling me I had sprained my ankle!. He got a wheelchair from our Fort’s Maintenance Manager at 8 am next morning, and arm crutches from the GP at 9 am and got me to the local hospital where they dx the fracture. I never even thought to tell them I had had bc or osteopenia. Spent 3 weeks in the wheelchair and another 3 weeks on crutches.
Then, I hit my foot on the fridge, broke a bone in a toe in the other foot, so I know I have some serious bone problems. It has never occurred to me until this evening and reading this post to ring my bc nurse to tell her about my two fractues and seek an appt. I don’t think it has anything to do with bc, just ageing problems due to steroids. We are going on holiday tomorrow for the first time in 4 yrs, so I guess it can wait until we return.
I have a brilliant bc nurse, and she is always available if I need help. I got Mondor’s disease of the breast 2 yrs or so ago, and she got me an appt in the breast clinic on a Saturday morning. I didn’t even know the NHS clinics worked weekends!. Unfortunately, my surgeon was not on duty, and the guy I saw sent me straight off for a mammo and ultrasound. Told me nothing was wrong, but I was not convinced, so rang my nurse back. She then got me an urgent appt with my own surgeon, as I thought I have Inflammatory Breast Cancer - the breast being red, swollen and a big nasty ropey lump. He took one look and said you have thrombophlebitis of the breast - and I said: “Oh, Mondor’s disease then”. He was amazed that I had looked my symptoms up on the internet and dx myself. He even had the on duty radiologists and radiographers come in and look at my breast - some cheeky ones even had a poke and a feel! He said in his 30 yrs of bc he has never seen Mondor’s in a bc patient, but has seen it otherwise. I feel exceptionally lucky to have such a dedicated and experienced surgeon.
Guess what I am trying to say is that not all bc doctors are the same - some are exceptional in their experience and compassionate attitude. Others, like the first Onc I had, should never have become Oncologists - radiologists or pathologists perhaps, as they seem to have no idea of how to relate to patients diagnosed with a life threatening disease.
I think most of us have said the same thing - you will always get seen urgently if you have symptoms of bone, liver or lung mets. The NHS cannot do endless CT,PET and MRI tests as my friend with lung and kidney cancer has in the US. As my Oncologist said: “You can have all the tests you want in the US, because you have to pay for them directly.” Like some of the posters, we are not told about mets. Well, I never was, and so we are not sure when to ask for help. I am now very proactive about any symptoms I have - it is my life, not theirs, regardless of the costs to the NHS. (edited in line with the moderation policy- moderator) I have paid into the NHS since I was 14 yrs old, and am still paying tax at 63 yrs, so I feel my contribution warrants proper treatment and attention.
That’s me off my soapbox for tonight! Sorry for the long post - but so good to talk to others with bc.
Take care,
Liz.