Help on cells moving on. Hi Jane
I found what you had written very interesting. I was of the understanding I had 15 out of 20 lymph nodes affected because of the length of time I have had my cancer. I had been to my GP three times asking for a mammogram and refused because I was not 50. She said the swelling and lumps under my armpit were the results of a viral infection. Unfortunately, I trusted her and by the time I put myself into the system it was 4 years later, hence such a large lymph node involvement. However, my oncologist said I was very lucky that it had not spread to other parts. My cancer is Grade 2 which is classed as moderate and I had always thought if it had been Grade 3 I may not have been so lucky. Also, I thought the cancer did spread from the breast to the lymph nodes. If the cancer likes the lymph position it may stay here for quite a long time before moving on hence some people can have a large lymph node involvement and no spread and others could have very little lymph node involvement and secondary sites elsewhere. I would be very interested to hear what other people have to say here.
Hi Pineapple I would be very interested to know who can tell you how old your node infection is. I have medical negligence and no-one is admitting anything. This may be because they are all covering their own backs. However, I would be interested to know if this is in fact the case or if there is something that I can do about it.
For Jeannie I was misdiagnosed follwoing a mammogram recall and there was delay in diagnsois of 7 months. Through a solicitor I got an independent oncologist’s report to see if I had a claim for compensation. (this cost me £1000-but he was a top consultant.)I I was advised that I don’t because even though the independent onc reckoned the doctor who misdiagnosed me was negilgent in English law (I think you are in Scotland and may be different there) you also have to prove causation…which means that you have to show that but for the negligence you would have had a 50% chance of 10 year survival. In my case because my cancer was aggressive it was estimated that my survival chances may have been reduced from 42% to 18%. Despite not having a case for I have pursued compaints against the hospital trust and the doctor through the General Medical Council. The latter is still going on…3 years after my misdiagnosis and 2 years after I first complained…luckily I’m still well and alive.
On the bit about spread: yes breast cancer does spread to the lymph nodes in the armpit, but if there is metastic spread its not that the cancer goes to distant sites via the armpit…it goes direct…at least that is my understanding. Lymph node involvment provides kind of ‘circumstantial evidence’ that the cancer may have spread. (Thanks to Susan Love’s Breast Book for that phrase.)
— Hi Jeanie, i dont know if they can ‘age it’, i dought it. But from knowing that the cancer was incapsulated he knew it hadnt been there too long.
I understand what Jane says about the cancer to other organs coming from the main site because i had only one node infected, encapsulated , so they said they know nothing had broken off it but i still had to have chemo incase of stray cells from the main lump had gone around my body (grade 2). Thats if i had understood what jane was saying?
—for jeannie I too am currently going thro a medical negligence claim and as I had lymph node involvement we are at the moment trying to ascertain how much difference the time delay [10 months] made. The pathologist is trying to work back from the current data to decide how many and the likely size of the lymph nodes at the time of misdiagnosis. I understand that this is not an exact science but a professional opinion and a pathologist is the best person to give it.
With medical negligence no-one can admit anything in case it goes to court .
Good luck
jakey
Jeannie Hi there. You and I have a very similar profile, right down to the name! I was pre-meno when diagnosed at 46 (2003). Am 50 this year. Misdiagnosed for who knows how long. Had been attending clinic for years for other breast probs and had had all the right tests. Trusted my bc surgeon (he was always very thorough). Three years down the line I am physically really well but can’t quite get past that grief and anger at what has happened.
Was on tamoxifen until I read in the Herald last year that Scottish oncs could now prescribe Arimidex for primary bc. Contacted mine who agreed that because I was a high risk and now post -meno I could have it. Started that in October last year. Always had hot flushes and night sweats, aching joints and all the usual tamoxifen treats and this has more or less stayed the same with Arimidex. What I wouldn’t give for a good night’s sleep!
It’s good to hear from you. Did you have your treatment in Ninewells?
Jane - Many thanks Thank you so much for your informative reply. It’s great to hear your doing well. I feel my next stage may be an independent oncologist.
However, I am getting a little cynical because the Scottish Medical Ombudsman said he was “independent” (?) and I did wonder how he could come up with a report when I was never asked any questions. I’ve waited for 8 months for this report and to be quite honest, I think it has been a waste of time. Will keep chipping away…
Hi Chalee Good to hear from you. I was diagnosed last February (went along for screening myself as I had reached 50). I’ve been on tamoxifen since the beginning of my rads - around Sept 2005. Like you, I read about Arimidex and asked my oncologist. He said as I was pre-meno (although like you I would consider myself post-meno as I have not had a period since my first dose of chemo) it would be best to have 3 years on taxoxifen then change to Arimidex. He told me that tamoxifen has an added ingredient to help osteoporosis (sorry, cannot spell) which Arimidex does not. Are you taking a calcium supplement? At the time I wondered if it was all to do with money (cynical again, but arimidex is much more expensive) but I guess I have accepted his views for the moment. No, I went to Glasgow for my treatment. I had a few choices but decided on Glasgow. I feel I made the right decision. I have met lots of great people and have, and still do, get great support from the Maggie Centre and Tak Tent. However, I have been to the Dundee Maggie a few times. Like you I have hot flushes, night sweats and aching joints. However, they are not too bad and I consider myself lucky when I hear other stories.
Hello again I’m not taking a calcium supplement. Looks like that is another thing for me to educate my local gp’s about. (Don’t they hate it when you say that you’ve been using the internet!) However I am taking part in a trial that includes occasional bone scans so will know if there is a problem. The Maggie Centres are great though, I have been to the Edinburgh one. It took me a wee while to pluck up the courage to go but it helps to have somewhere ‘safe’ to get used to saying the words IV’E GOT CANCER at the start of the whole ordeal! (They are in inspirational buildings too)