What happens next? Unsure but diagnosed nearly 3 weeks ago

claire-2014

I'm not sure if some people may have read my first post in the Not Diagnosed but Worried section, but to quickly recap: I'm 29 and was diagnosed with breast cancer in the breast and lymph nodes about 3 weeks ago.  Since then I've had MRI test, bone test and CT scan along with tomography and mammograms. 

I was meant to have my results after 2 weeks but because they couldn't fit me in for the MRI scan til last Thurs this meant that I would need to wait until the following week - this Friday (the MDT meets on Wedsnesdays and results appointments are on Friday's)

Last week I found that a new lump had literally grown from nowhere so I informed the hospital about this, I was really worried that they would need to biopsy the lump and that it would hold up my results another week so I told them straight away.  I was advised to wait until after my MRI then they would let me know if it needed biopsying - typically they rang yesterday to say they want me in for an ultrasound and maybe a biopsy but the results would not be in time for Weds MDT meeting so there is the potential I have to wait another week! 

I already looked over the MRI technicians shoulder at my notes (bad me!) and saw that my cancer is grade 3 but that is all I know (obviously its grade 3 though as a lump has grown in a couple of weeks!)

I have a number of questions that have been concerning me and just wondered if anyone could help.

Is it acceptable to wait 4 weeks before being able to discuss my cancer and treatment?  I feel that this is too long to go, not knowing anything other than the fact that I have cancer - it's been emotional torture as I'm sure everyone on here can relate to.

What can I expect to happen next?  I've had my scans, biopsy today then results next week - what comes next?  How long will I have to wait for treatment?  How long can treatment take? I feel that if I can get an idea of how long I will have to wait then I may be able to mentally prepare myself as at the moment each time I'm told about another test or wait it feels like a huge kick in the stomach and puts me back down for a few days.

farmerlucy

Claire - I'm so sorry for the terrible news. I can't say what the wait time is in the UK but if you go to this forum Forum: Triple Negative and look for the topic "Calling all triple negative in the UK" and post your questions there I know the ladies would be able to help. I did a search for UK and that seems to be a pretty active thread.

I would think that your case would be high priority because of your young age. Best of luck to you. I hope you get some answers soon. 

Infobabe

Is that grade 3 or Birads 3.  Birads 3 three meaning lower chance of cancer.  If you have not had a biopsy or lumpectomy, they cannon tell what grade it could possibly be.

If the lump is growing fast, makes it all the more likely it is not cancer. 

I am very sorry you are having to wait so long for results.  It is emotional torture because you have so little information.

MelissaDallas

Infobabe, she said she was diagnosed with cancer in the breast & lymph nodes. She isn't waiting on a possibly benign result.

edwards750

That's what I was going to say Melissa. She already said she has been DX. Waiting is the pits. Makes you even more anxious. My suggestion would be to bug them and see if they can possibly speed up the process. All they can do is say No. I didn't have to wait long fortunately because I'm a worrier by nature. 

Claire - there is no way to know the timetable until you know what their treatment plan is. Once you know that usually the process gets into full gear. My biopsy results came back in less than a week, BS scheduled my lumpectomy followed by my radiation treatments. Come back after the biopsy results come back. It will be okay. We are here to help. Diane 

Infobabe

Sorry, I thought she said she was waiting on biopsy results.

claire-2014

Sorry my original post was probably a bit confusing. 

I was diagnosed 3 weeks ago with cancer in the breast and lymph nodes (lower outer quadrant - grade 3) had all the scans but showed up a further area of concern in the lower inner quadrant - it is that which I had biopsied yesterday.

I have been pushing hard for them to at least give me results of initial biopsy and MRI, CT and bone scans as I'm terrified about the cancer having spread etc. 

They did say that I'd have to wait until next week when the second biopsy results are back but after a lot of pushing they will see me this week and discuss initial findings.  I mentioned to the radiologist yesterday that I want a MX and was frustrated with waiting so long and she advised that I tell the consultant this as this may help to speed things up a bit.

I have been reading about multicentric cancer since yesterday and really think that I need to push for an aggressive treatment for this - can't help but feel that medical people I have dealt with so far are in no rush!

Janet456

Claire - I think the NHS guidelines are to be seen for mammo and ultrasound within 2 weeks, then you have had the additional testing.  Once all the results are in you will have a treatment plan put together by the MDT and if you have surgery first (from memory) I think it has to be within six weeks.  

It sounds as though your treatment plan meeting will be the end of next week when all the results are in.  At this meeting you should be given all the info and order of treatment.  xx

farmerlucy

Thinking of you today Claire. Hang in there.

Agent99

I'm in a similar situation (hurry up and wait)  but you need to know that grade 3 is DIFFERENT from stage 3.

Hang in there!

Kicks

We are all unique and there is no one plan that fits all.  It does seem to me, based on my experience, you should be getting quicker answers though.  I had to wait a week to see my PA  (she was on vacation) after I found the enlarged node under arm that had not been there the night before.  I saw her at 11, was at radiology for a new mammo, sono, and biopsies by 1 that afternoon.  I had the path report the next morning at 8 - IBC.  It was 17 days from my DX til I started neoadjuvant chemo. 

You need to be 'the squeeky wheel' by keeping on them at least daily til you get  the answers you deserve/NEED now - not later.