7 weeks and still no plan...

Hi Kboo72 and welcome to the forum.  We're a friendly lot,  and this is our safe place to share stories,  give support and sometimes rant!

it does seem a long time to wait between tests and results,  but I imagine that they are trying to find out as much as possible about it now to decide the best treatment for you.  If they have said that a lumpectomy isn't possible I presume that they're looking at a mastectomy? Is there a reason why they don't go ahead with the surgery and let pathology find out what is happening in your breast? Are you HER2+ or triple negative for example,  as you'd likely have chemo before surgery if you were. 

Most of us on here have found the waiting on test results one of the hardest parts of the process.  I developed actual anxiety whilst waiting which I've never had before or since moving onto treatment. If you're waiting almost 3 weeks on the latest tests you're having because your doctor is away over Christmas could you ask if there is another doctor you could see, of do you need to wait for then to discuss the results in team meeting first?

Take care,  and let us know how you get on. If you need to have a chat in the night there's a thread called 'Awake'. Xxx

I had to wait 6 weeks from diagnosis to be given date of op date also, but op was then within 2 weeks, Mine was IDC grade 2 with calcifications. X

Hi Londonmumof2, 

Thank you for taking the time to reply. 

Yes, they have talked about mastectomy all along, which is why I am unsure why they are doing multiple biopsies.  I will try and have a chat with my BCN while in clinic tomorrow, as I have started to get anxiety about the delays too, I have never suffered from it but was physically shaking at work today while someone was asking how I was doing and having trouble getting a full lung full of air too! Weird...stress can do strange things to us. 

I have tested negative for HER2, but ER & PR positive, so will have ongoing hormonal treatment after surgery etc. 

Thanks for the advice on other groups & checking if a different doctor could possibly speak to me, I was going to ask, but assumed the delay would be caused by Christmas. I am getting quite a lot of pain with the tumour, which sometimes takes my breath away, so eager to get this out ASAP! 

I hope your journey is going well, it is so helpful to know this is not something we do alone.

xx

Hi Kemp77, 

Thank you for taking the time to reply. I’m sorry to hear your wait was extended too, but see now that you are post surgery and onto the next steps. I truly hope all goes as well as it possibly can for you. 

Did you have a full node clearance at the time of lumpectomy, and did they know or suspect that cancer was present in the lymph nodes? 

I do have a fair amount of pain going up to my collarbone and into my armpit, but it is intermittent, and an ultrasound has not shown anything untoward (there is only a little bit of swelling). 

It seems there are so many variables along the way, that we cannot know anything for certain. By the time I see the consultant it will have been 10 weeks from diagnosis, I truly hope they have a plan in place by that point!!

 I too am in my 40's, with two grown children who have left home and an 18 yr old still at home. Teens are hard at the best of times, but I have some sweet glimpses of kindness amidst the angst.  It is hard to comprehend when we feel 'too young' to have this, but I guess this disease is not picky! 

 Bless you & keep smiling, 

xx

Hi Kboo72 Sorry to hear about your diagnosis and ongoing tests.

 I waited 62 days from the abnormalities being seen on screening mammograms to my actual surgery day. I had a biopsy on both sides one was diagnosed invasive lobular, the other was benign fibrocystic changes (this was a stereotactic vacuum biopsy as it was an assymetrical patch not a mass).

I also had a mri with contrast on week 6.

I was lucky mine was one small mass and had not reached the lymph nodes. 

Have you been sent copies of the letters sent to your GP?  There are nhs targets for treatment times but they may need more samples to make a decision which order to arrange the treatment/surgery etc. 

I does seem to be a dragged out process especially if they are 100% sure that mastectomy is the only option for you anyway. 

You could ask if there is any chance of getting your results sooner.. I got my mri results the next day over the phone, took me by surprise as they said they'd send an appointment, it was good news confirming what they had suspected just one mass nothing else lurking , they also gave me the surgery date over the phone for three weeks later. 

When I was first seen consultant said surgery list was full for the next month but they were adding more slots to get everyone done so I got early November. 

My hospital said radiotherapy carries on right up to and around Christmas/New year so apart from a few days delay and a few clinics missing a week. 

I had surgery 5 weeks ago now I'm waiting for oncology genomic test as post op pathology changed the grade from 2 to 3 so the waiting continues... I may know before Christmas may not arrgh... I'm trying to keep busy.. 

Sending you a big, but gentle hug and hoping you can get some answers ASAP and if not, at least you know you're not alone anymore.

Good Luck  for tomorrow 

Hiya

When they tested my lymph nodes they showed as negative so they only removed ancillary nodes. But by the time they operated they were positive.  My pain is more my arm (developed cording) and nipple, armpit is still numb. One thing I have learned is lots keeping changes so don’t get hung up on one thing, baby steps but the wait and not knowing is the hardest. 

Big hugs x

Hi Autumn49, 

Thanks for your reply, I am finding these a real help to know others are experiencing similar things. I’m sorry any of us finds ourselves here, but I believe we often see the gold in ourselves and others when times are trying.  It's really great to get support from this community. 

I have been in for a vacuum assisted excision today, had a VAB 3 weeks ago and they went back into the same wound so slightly unpleasant.  But on the upside I questioned its relevance before the procedure and ended up seeing the top consultant who examined me, said to go ahead as he thought he could remove the tumour via a lumpectomy if these results came back benign. Woo hoo. 

He also was disgusted that they had delayed the results by 3 weeks and told the team off with me in the room stating he’d have them back in a week and to ensure I ask to see him when I go. Quite the turnaround...so all being well I should know more next Thursday. I don’t mind the wait if it is justified, it was just that every appointment had been delayed so far with little or no explanation. Maybe because I had been so 'reasonable' and not at all pushy, so they thought I wouldn’t complain.

i do get copies of the letters to my GP, but they are already 3 tests and a month behind what’s actually going on! I haven’t had any MRI or additional scans other than those focussing on the micro calcifications, so I guess they’ll come sometime. I definitely  won't have a surgery date within the 62 day NHS guidelines, but feel happier after today’s discussions. 

Not so good that your tumour got upgraded as I guess that will mean some heavier treatment going forward, I hope you get your results soon too, and gentle hug received & right back at you...definitely needed as I bleed every time I try to do something, it’s pretty painful atm. 

Here's to the journey, keeping busy and being thankful for the small treasures in each and every day (like kind messages from strangers, ) 

Kxx

Hi just to say that positive nodes could have been there all the time. I had a 6mm mass in one node (which showed as clear on the ultrasound 2 weeks before my expediated surgery. About 20% of 'clear' nodes aren't actually clear.

Hi, 

Ok, I haven’t had any tests on the lymph nodes at all, I’m guessing that will happen at surgery time. I’m sorry to hear of the pain you are having and hope it is temporary and will improve with healing time. 

I think it’s the changes that are hard, but as long as I am kept informed I can manage...

Big hugs right back at ya.  

xx

Hi,

I’ve found a lump on 2. November, had the mammography/ultrasound/biopsy 9 days later. They found a tumor in the left breast also where they send the biopsy off for a second opinion. I had the tumors/nodes taken out on the 11. December. I’m in Buckinghamshire.