Hi Racheal, Good on your team for realising things weren't adding up, as there was evidence of something going on with your nodes then they will suspect invasive must be in the mix as pure DCIS can't spread.
Not what you want to hear of course but it is what it is and needs to be dealt with. Of course you can insist on being told everything upfront, if only they had an incling of what it feels like to be drip fed information then Im sure they wouldn't do It!!
Im glad you had a good holiday and were able to leave it at home so to speak 😊 Xx Jo
Rachael, it sounds to me as if they are concerned that this is an invasive cancer with possible lymph node involvement, but they haven't managed to get that confirmed from the sample they have so far. Sometimes the biopsy doesn't reach the right area so they need to try an alternative method. They may have only got DCIS in the sample but believe there may also be an area of invasive ductal carcinoma that they haven't managed to reach. That could explain the iffy lymph node .
One reason for delays is often they decide what to do in the multi disciplinary team meeting, where they review cases. And they usually meet on the same day each week, so if your biopsy results come through on a Thursday they may not get discussed till the following Wednesday. That's what caused me lots of delays anyway.
All the delays leave you in limbo and trying to guess where this is going. It's very hard to stop your imagination working overtime when you don't really understand why things are happening.
I found the best way to get answers is to be up front and tell them that you don't understand what's happening and it's more worrying than being told the facts. I started out trying to be a good patient, but actually you need to be an assertive one, and the better informed you are the more information you get. I think they're also very wary of giving patients more information than they want, some people are more comfortable with not knowing. So if you do want information, I'd go in with a list of questions written down.
I remember so well how horrible this stage is, so sending you a huge hug, and I hope you get answers soon, and even better, a treatment plan.
Hi Rachael ,
Its so confusing at this stage when they are still doing tests to gain an accurate diagnosis, they can only tell you what they know from the biopsy and imaging now until after surgery when the entire lump will be checked. I knew I had invasive from the off but I also had some DCIS which I didn't know about until after surgery. Things can change so try to remain open minded and not Google too much as you don't have all the facts just yet so can't really find the answers.
Go on your holiday and try and park your worries until you get back, you can't do anything about whats happening and with hindsight spending time endlessly fretting about what ifs is just exhausting and pointless!
At this point all you can do is speculate which drives our brains mad so try and just go with the flow until you know for certain, having the full facts is so much easier to deal with whatever the outcome, I think we all here will agree that limbo land is the worst place to be.
Take care and try and enjoy your holiday Xx Jo