Having been diagnosed 10 days ago, I have finally been told today the type and grade of my cancer - Grade III Papillary, ER8/PR6 + it is in the lymph nodes. The HER results (?) aren’t back yet. So I still don’t know if I will need chemo or not. From what I undertand the type/grade of cancer indicates I might, but the ER result indicates I might not - does that sound right? So it will depend on whether there is any cancer cells around the lump and on the HER test.
I’m really struggling with not knowing. Is it even a big deal to have breast cancer if I just need the lump/lymph nodes removed and radiotherapy - or is that just me doing my typical minimising? Having felt pretty much fine for the first 10 days, I’ve now told the people I need to tell and I just feel really empty and sad, but it’s almost like I can’t give myself permission to feel rubbish - or to expect people to be sympathetic and patient with me - until I know what treatment I’m facing. I’m also slightly worried that I won’t need chemo - I think I’ll worry that they haven’t realy sorted it properly. Is that a normal way to feel?
I’m guessing my inability to work out how to feel is all part of the process of coming to terms with this, and waiting is just part of the game and I have to get used to it. Anyone out there identify with how I’m feeling? I’ve got 2 weeks to wait before my op then another 2 weeks or so after that to find out what the treatment is going to be. Will I be completely insane by this time next month!?!?
Being in a ‘whirl’ about what is happening to your body is part of it along with feeling that it isn’t right as you don’t feel ill.
From what I gather having Lymph Nodes removed and tested (sometimes more than the 2 sentinel nodes) is fairly standard for any breast cancer. Chemo and radiography depends on what they find as you go through all the tests, Go with the tests and ask lots of questions as you go along. It always helps to have someone with you as there is a lot to take in on any consultation and to write down questions as you think about them .Do not rely on your memory.
You haven’t said what sort of op you are having - lumpectomy, mastectomy- do you know yet
I’m just recovering from a mastectomy with an implant. Fortunately I don’t need chemo or radiotherapy. Others are not so fortunate.
It seems that every cancer requires slightly different treatment.
. This Beast certainly puts us into turmoil but slowly, as results come through and treatment plans are worked out you begin to understand it.
Those diagnosis weeks where you don’t quite know what sort of cancer it is or what the various labels mean were just awful as there is so much to take in and it feels as if you have to learn a whole new language to understand what you are being told by the medics.
The treatment seems to depend on so many things but a couple of things I have picked up so far are:
if people are HER2 positive they have to have chemo because they need Herceptin which can only be given as part of a chemo regime (think that’s right but someone will correct me if I’m wrong - I’m not HER2 positive myself)
chemo is more likely if lymph nodes are involved but it seems to depend on the number of lymph nodes as I think that if it is just one or two they can be treated by surgical removal plus radiotherapy
So, basically I’m not really a whole lot of help with the medical questions am I! Sorry, hopefully someone more knowledgeable than me will be able to help you but really your medics are the best people to ask as I understand that papillary cancer is quite rare so different treatments might apply.
So far as coming to terms with the seriousness of it all, that’s a really good point and I think a lot of us have struggled with that as it’s hard to accept that any of us could have something so badly wrong and yet feel perfectly healthy. Also, when it is just medics saying ‘surgery plus radiotherapy’ it doesn’t sound like a big deal does it as it’s just a sort of concept rather than something real. I think this is something we all do as part of a coping mechanism that helps to get us through the initial stages and then we all seem to get into the detail of particular surgery/treatments so we don’t spend time looking at the big picture of the seriousness of it other than in the wee small hours of the morning which is when the tears flow. I shouldn’t say ‘we’ of course as I can only speak for myself but my experience sounds a lot like yours.
Anyway, despite this being a horrible club to join, the members are astonishingly wonderful, just totally supportive and helpful and welcoming so we’ll all be here to help you as much as we can.
Welcome to the forum. As well as the support to be found here you could also phone our Helpline for information and support. Opening hours are 9-5 on weekdays and 10-2 on Saturdays. The number is 0808 800 6000
Hi Mac and welcome to this fantastic supportive group , I am so sorry you find yourself here but you will find so many wonderful people that can help you feel a whole lot better :smileyhappy:. Waiting for things to happen is so tough but honestly once you get your date for surgery things will seem to happen alot quicker. I found recovering from surgery made the days go a little quicker and closer to the results day. It is so hard to think about treatment to come. The surgeon said to me…Oh you will have wide local excision, sentinal node biopsy, radiotherapy and hormone therapy. As far as I was concerned that was that! but no it wasnt. My cancer was grade 3 (active cancer) and because my ER was only 3/8 (closer to negative then positive) they felt hormone therapy would not be beneficial. So the bottom line was I could have radiotherapy but that would be it, therefore no safety net (from hormone therapy). It was decided chemo would be that “safety net” and I was devastated…Holiday in Mexico end of April cancelled, daughters wedding in July postponed! honestly it knocked me for six as I really thought what was said at that first meeting was what I was going to be having. So if I can offer advise, think you will be having the “works” and if no,t everything will be a bonus :smileyhappy: I have to say the more the days go by the more I realise that if I didnt except the chemo I would always be thinking …what if…
It’s an emotional rollercoaster but we are with you all the way through the ups and downs. Take Care Lynda xx
Thank you for your replies. They were really helpful. Getting the balance between dealing with the facts and the feelings is hard so your replies have helped with both.
To you both, and to Carmen, I would like to wish us all lots of luck!!
, I am so sorry you find yourself here but you will find so many wonderful people that can help you feel a whole lot better :smileyhappy:. Waiting for things to happen is so tough but honestly once you get your date for surgery things will seem to happen alot quicker. I found recovering from surgery made the days go a little quicker and closer to the results day. It is so hard to think about treatment to come. The surgeon said to me…Oh you will have wide local excision, sentinal node biopsy, radiotherapy and hormone therapy. As far as I was concerned that was that! but no it wasnt. My cancer was grade 3 (active cancer) and because my ER was only 3/8 (closer to negative then positive) they felt hormone therapy would not be beneficial. So the bottom line was I could have radiotherapy but that would be it, therefore no safety net (from hormone therapy). It was decided chemo would be that “safety net” and I was devastated…Holiday in Mexico end of April cancelled, daughters wedding in July postponed! honestly it knocked me for six as I really thought what was said at that first meeting was what I was going to be having. So if I can offer advise, think you will be having the “works” and if no,t everything will be a bonus :smileyhappy: I have to say the more the days go by the more I realise that if I didnt except the chemo I would always be thinking …what if…