Post Op results show high level of lymph node involvement....help

Hi All

 

I have been searching through various threads and will probably ring the helpline in the morning…

However, I was wondering whether anyone has any advice as I am in need of it…

I have been told that my high level of lymph node involvement (10) puts me into high risk of developing mets/there may already be spread involved. I have very recently had a full mx, and am very new to all of this so not able to give that much more info. (I know i don’t need Herceptin…)

I have a chemo and radio treatment cycle lined up, and also various other drugs to “attack this as agressively as we can”

Is there anything else I should be asking about/asking for/checking/scans requesting etc?

(I have a suspect area in the liver that showed up after a CT and and MRI seemed to make it no clearer… they are hoping that it responds to the chemo planned if it is linked…

I am so terrified by all of this, that I dont know whether to read up on it more, or just stick my head in the sand and trust the medical team…

Can anyone offer words of wisdom?/Advice/support…

Feeling very low/lost and scared… I apologise for posting in the secondary forum, as I guess that technically speaking it is a primary diagnosis… just in need of some more knowledgeable help and advice…

Hi just to say go with the treatment plan.try to do a day at a time and not trying to predict the future .get helpline advice regarding side effects of chemo …take care …sharon

Hello Leo

You are welcome on the secondary threads please try to stay calm stress can get you down. If you google you will get a lot of out dated information. Do contact the help line they give warm friendly information and a listening ear.

You will find many ladies on here with lots of advice and they will be on the same chemo or have been on it. It is a very frightening experience that you are going through at the moment. So much will be going through your mind we have all been there. There are days when you will feel down and feel no-one understands how you really feel but you can come on this site rant and rave as much as you like get it out of your system we all understand you. Ask your cancer nurse if there are any support groups near you where you can meet ladies in a simular position to yourself. Alot of us do stick our heads in the sand at times but then we do raise them up again your team do seem to have your treatment worked out for you which is good.

We have many ladies who have survived this awful decease for a long time so stop worrying and try to have a good night sleep. Please keep in touch and let us know how you get on.

 

Best wishes xxx 

Hi Leo,

 

Sorry to hear about your diagnosis and the uncertainty about whether you have secondaries. Unfortunately scans are not perfect and it’s not always possible to tell exactly what’s going on without waiting to see how things develop. There is another type of scan called a PET scan, which shows activity (uptake of a glucose solution) that may be cancer, but it only shows things above a certain size. I get the impression it’s not used much in this country - I was offered one during the period when secondaries had been suspected but not confirmed (6 years after my primary diagnosis), but it wasn’t really that helpful. If you don’t have secondaries, you’ve said that your treatement plan is aggressive so it sounds like your medical team is doing their best to cure you/put you into long term remission. If you have very limited secondaries at first diagnosis, some oncologists will go with an aggressive treatment plan anyway, so your treatment plan could be the same either way. Although secondary breast cancer is currently considered incurable, it’s treatable, and some people live a long time with it. And you never know what new treatments will come along in that time. So as Scratch has said it’s probably best, if you can, to just deal with the treatment for now and try to not look too far ahead or spend a lot of time reading about the various scenarios. Especially as some people with no axiliary lymph nodes involved go on to get secondaries and some people with node involvement remain clear long term. You don’t know at this stage how your cancer is going to respond to treatment so although it’s normal to worry about the future, it won’t change anything and it could be useful to develop some techniques to cope with the anxiety and manage it as well as possible. Talking to the helpline and/or arranging for some psychological support via your hospital or your GP are 2 possible routes to try, or a support group might also be helpful.
All the best with your treatment and let us know how you get on.
Tournesol x

Hi all

Thank you so much for these replies, you have all been really helpful.

It is also useful to know about the scans as well, as I want to make sure I am having/booked in for every thing that I need to be booked for in order to have the best possible chance of nailing this thing…

I think counselling is also probably the way forward too…

Much love to you all with what you are going through, ad thank you for taking the time to advise/support me.

 

Hi Leo. I have just been searching for similar answers. I have just had a full mx and on my follow up appointment was told I needed a CT scan as the surgeon was concerned about a lymph node that could not be removed. I went for the scan and today have been told there are cells in my lymph glands - one just under my collarbone and one behind the breast bone. Nothing has shown in any organs so I don’t know whether this is classed as secondary cancer either. 

I have to have chemo with herceptin and another antibody drug (not sure of name) and another CT scan after session 3 of chemo to see effects. The oncologist said it’s tricky to treat but will be controlled. I’m scared too - after 15 minutes of listening to what was going to happen I stopped taking it in and truth be known, even though I’d asked for all details to be given, I daren’t ask for any prognosis. Hoping for some insight for both of us.