I was dx in July had wle and snb. 2 out of 5 nodes affected. Seen ONC today who has confirmed Chemo(starts next Friday) then Rads followed by Tamoxifen. Ready to take the beast on, BUT he wouldnt check me out for further tumours,why?? He said MRI cant pick up under 5mm and over would be untreatable! Family want to pay for private tests although I dont think I could afford it but not even sure what tests, can anyone help with some advice please?
Thanks
Jackie
Hi Jackie
Sorry to hear that you are not getting the tests you feel you should be getting. Just so you know, I had several affected lymph nodes, grade 3 invasive ductal carcinoma and HER2+ and had a CT scan, bone scan and blood tests and I think some people also get an MRI although for some reason I didn’t. If they haven’t given you any other scans then maybe you should ask for a second opinion. Do you know what chemotherapy you are having?
Best wishes
Ruby
Thanks Ruby
Yeah Im having 3 FEC and then 3 TAX? does that sound right? I’ve been checking web re private ct scans but dont know whether to go and see GP who is not brill or ring ONC’s sister and push hospital??
Thanks
Jackie
I also had 3 FEC and 3 Tax so yes that sounds right. I think I would definitely try and speak to your GP about this and also push the hospital and ask how come other people get these scans. I think you’ll find a lot of ladies on this site have various scans and tests. Not all hospitals offer the same treatment/tests but the chemotherapy you are getting is good so that’s something positive.
Please let me know how you get on and maybe try and get a second opinion.
Best wishes
Ruby xx
Jackie,
you are entitled to a second opinion about your treatment. Could you find out where they do scans as standard and ask to be referred there, whic I assume would be free.You could start a thread asking for advice from people in your area. it might be just your doc.By the way I have not heard of many peopple having a MRI scan, I think they are expensive. Everyone in my area has a whole body bone scan and a CT scan plus chest x ray. I know some areas don’t do scans because it only gives a certain amount of info and that could change 2 months later. I have to say I was anxious about the results but very relieved by clear scans even if they don’t show the future, it was enough for now. I had no nodes involved and still had them
Good luck but don’t get too anxious. I would speak to the onc and say you want them and will he refer you or can you go privately. Maybe ask if his/her private patients have them!! I don’t see much point having them without him agreeing to use them first, they need to be part of your treatment plan.
Thinking of you
Lily x
As many of you know I was offered MRI and refused it for the reasons given by Jackie’s doctor.
Jacks -
Have left a message for you on FB
Take Care, talk to you later
Tracey
xxxxx
Thanks Tracey
Finding Facebook too time consuming at the moment but guess once I start Chemo will have more time to relax but will check out message and speak later
Jackiexxxxxxx
Hi Jackie,
I can totally understand your worries, I was diagnosed last July with Grade 3 16mm invasive ductal I had EC and tax and then wle, had check on margins, not quite ok so had 2nd op got full clear margins and had a full clearance, 1/16 was affected. Unfortunately I developed a seroma (fluid build up under arm) and after having drained a few times got an infection, so I had to have 3rd op to clear. All went brill. I then had rads and am taking tamoxifen, because of extra op I have just finished my rads last Fri, yipee!!! ( I was told it would be a year out of my life, and it was just over.) I had mammogram in early July which was a scary thing but all came back NED. The taxotere is very strong ( good your getting that) but I was told the domestos of the chemo world, kills all dead, unfortunately good cells too which is why people get so many side effects. It is doable, this time last year I was well scared with the thought of what I had to have, you will get there. Come on here if you need a chat or are upset, or worried there is always someone to help.
I have friends who have had scans etc, I asked about blood and bone scans and was advised by both specialist that I see and have also looked into this that often they can give false positives, create lots of worrys and anxietys, they can pick up normal things you have always had, often cannot pick up new small cancers, as a rough guide cancer needs to be about finger nail size to be picked up, they said they monitor closely and watch for signs, symptoms ( I think I will def do that anyway and I have 2 close friends who have had scans and they watch and worry as well, I think its the nature of this ba…tard disease, it will always lurk in the back of your mind, They said I can have scans MRI later if I really want one. I am being treated privately, we have private health through my husbands work so it def not a money concern so hopefully this will put your mind at rest abit.
There are a number of threads on this site about the same thing which I have read though, it seems alot of oncologists work in this way now. Now I have finished my treatment, so much going on before, I have decided when I go to see consultant onc next week, I am going to have a good chat about it all with him. I will update you.
Where abouts are you, do you have a family, support network,
Take care
Dawn X
Hi Jackie,
Don’t understand the over 5mm untreatable bit , I would ask breast nurse to clarify for you, I know sometimes when I went in the beginning I often got info overload, looked on websites etc for more info and totally confused myself, Not saying this happenned to you but worth checking what you heard because it is worrying you,
If it worrying you its important!!!
Take care
Dawn X
Not untreatable I think but not curable.There are loads of treatment options to contain or control sec spread but as I understand it,it cant be cured at the moment no matter when it was found.
Hi Jackie
It does seem to depend on where you’re being treated and the onc’s views on scans. Different areas have different criteria it seems. In my area no scans are offered either during dx or after treatment has finished (other than mammograms) for the reasons mentioned above ie scans don’t pick up everything and also scans can show areas ‘of concern’ that are nothing other than wear and tear and other ‘normal’ body problems. If there was cause for concern I’m sure your onc would recommend further tests but it may be worth asking a few questions 1st or getting a 2nd opinion which would put your mind at rest. The view of anything over 5mm elsewhere being untreatable is probably the wrong word as he must be referring to any secondary BC that may show up which is incurable rather than untreatable.
Nicky x
I had scans at diagnosis, CT to liver/abdomen, bone scan and chest xray. I think this is just the way my particular consultant does things.
I also had an MRI scan of my breasts, but this was because the only sign of bc was a swollen lymph node in my armpit and mammo and ultrasound did not show any primary in the breast. The MRI scan pinpointed three areas of tiny cancers 2mm, 3.5mm and 6mm in my right breast.
What the oncologist was telling you (I think) is that any secondary spread over 5mm cannot be completely eradicated by chemo. This was what my onc told me when I asked if I could keep my breast as I thought the tumours were so small that chemo would get rid of them completely. He told me that if a cancer is visible on any sort of scan then chemotherapy will not completely destroy it. Only surgery stands a chance of doing that.
Good luck with the chemo, I had 4FEC and 4Taxotere, finishing last November, it was hard, but I’ve survived, and so will you.
Good luck and hugs
xxx
HI Jackie
It sounds as if you have a lot of questions which you need to get answered to put your mind at rest. You could give your breast nurse a ring who should be able to talk things through with you. Or you can phone our helpline on 0808 800 6000. It is open Monday - Friday, 9am - 5pm and Saturday, 9am - 2pm
It is a free and confidential service. Staffed by experienced nurses and specially trained workers with a personal or professional experience of breast cancer, it is able to offer information and support on any aspect of breast cancer.
Hope this helps
Ann
My tumour was 8 cm to begin with, after 3 chemos (and now started on herceptin also) it is down to 4 cm. I was never told it was not curable, and my bone, liver and lung scans were clear so at the moment it is just a primary cancer.
I was a bit shocked to read that over 5 cm is not curable!
No hon its not primary bc tumours that are not curable over 5cm they are of course.It is secondaries over 5mm[below which they cant be detected]
Hi there,
My Onc does not do scans unless you present with symptoms. I had a chest xray as part of my pre op. I then had another when I was hospitalised with a cough and high temperature in the middle of Chemo. I recently developed a cough and shortness of breath and was sent for another chest xray which detected a shadow on my lung. I was then sent for a Lung scan and was told that I have scarring on my lung from the radiotherapy because I have abnormally long lungs and one had been caught when I was zapped. So all ok I think ?
I think that whether you get scans or not you still worry about every ache and pain.
Best wishes to you all
Love Andrea xx
Phew, thanks Horace, thats a relief