Time delay in treatment

Don't worry about the apparent delay in treatment.  The mastectomy would have cleared out the majority, if not all, of your cancer,  The chemo and radio will be the belt and braces to ensure they have it all.  I had my mx and lymph node clearance on 3 December and see my consultant on 6 January for the histology results on what they removed.  Hopefully, they got big enough margins and I won't need any radiotherapy (chemo doesn''t work on the type I have).

Thank you Lesley, it just feels like it’s dragging on and I’m already feeling so drained by it all. I’ve gone from being told it was DCIS and needed a mastectomy and Radiotherapy to being told it’s invasive, grade 3 Hormone receptive and HER2 positive. I just want to get on with treatment and get over this. I hope your results go the way you hope. X

Hi Neenie29

A warm welcome to the group. Sorry to hear about the delays you've had. I totally understand how frustrating it must be, but Lesley63 is right - surgery is far and away the principle treatment for breast cancer - some people only have surgery, no chemo or radiotherapy. Breast cancer doesn't grow really fast, so it's unlikely that it will spread to your nodes after your surgery. I remember my BCN once saying to me "oh, a couple of weeks delay isn't going to make any difference" can't remember why it was being delayed but certainly it seems to be general thinking. We've even had people here on the forum who have been given the OK to go on holiday before starting chemo. 

I'm not surprised you feel drained with the constant changes in diagnoses and treatment plans - at least you know they are being thorough and you are getting everything thrown at it. Take it one step at a time - head down and keep going. We're always here for you if you need us.

R

Thank you Ronstar,

this forum has helped me a lot. I’ve got a lot of answers by simply looking at what other people post etc. I’m just worried because this Cancer grew so big so quickly. I had a mammogram and Ultrasound only 2 years previously and they found nothing of concern. (Those results are being looked at again). I know a month doesn’t seem that long but I get quite anxious when I keep getting told results are not back yet etc.and there’s been a lot of that. I know Christmas has delayed things but originally they thought I would starting Chemo beginning of this month and I haven’t even seen an oncologist yet. 

Neenie

Yes, I understand you being anxious.  Hopefully you'll get to see an oncologist soon and they will be able to reassure you. Do stick around on here - it's a great place to share everything and although we wish no-one had to join us, we welcome everyone with open arms. I learnt so much from this site and will be forever grateful to everyone here.

I'll keep my fingers crossed for that early onco appointment!

R

Hi

I feel your frustration and I hope your further treatment plan has begun

My story is very similar with so many delays and I'm so frustrated ........ which is impacting on my well being.

To cut my story short I had a mastectomy 3rd Feb 2021 the full histology x2 invasive ductal carcinoma grade 3 40mm & 24 mm with possible lymph vascular involvement 2 out of 4 ( part of sentinel biopsy) nodes positive. Now awaiting a date for full axillary clearance.

All the way through waiting for dates / results / MDT etc. My HER2 status sent twice for FISH which now is negative . Initially the breast team had moved to the private hospital but now they are moving back to NHS hospital Trust.  

I got my results 8th March and informed by consultant my axillary clearance in 3 to 4 weeks. I phone breast nurses & secretaries yesterday and not on any list which is up to the end of March . There are no lists yet for April as quote "don't know our theatre times/session.

I know at least I would need 2 weeks notice due to Covid as you need to isolate for 14 days pre op and still no date.

My breast nurse just says we need to prioritise and we are busy!! 

In the mean time I'm sitting here scared not sleeping and worried that possibly my cancer is spreading without urgency on my Treatment plan

I had breast cancer 14 years ago and my treatment was fast without delay WLE lymph node clearance chemo and radiotherapy. Even my oncology appointment was before my lymph clearance to save time. When I enquired when my oncology appointment will be I'm told one step at a time and will not be arranged until after my lymph node clearance. 

I feel I'm fighting my own corner and email / phone breat nurses every week but no further forward as now approaching 4 months when I first went to GP (who was brilliant and fast tracked me ) and was seen in a breast clinic within 3 days but since then it has been a snail pace xxx

I had a clear mammogram 2 years ago so devastated my this diagnosis 

Wondering if anyone else has gone through this and how did you cope xxxx

Hi Mahem, 

sorry to hear your in Limbo at the moment. When I was waiting for treatment I know I had the same fears about what was going on inside me. My Nurse said that by having the mastectomy, for now the Cancer was gone and that the treatment was to make sure it didn’t come back. I know that doesn’t help you because it’s in your lymph nodes but I hope you get somewhere with treatment sooner rather than later. I had also had a mammogram 2 years previous to this diagnosis and was devastated because you can’t imagine how it can grow and develop so quickly. I know this doesn’t help you but just know you’re not alone and we are all on this journey together! Xx

Take care

Janine x

Hi Janine 

Thank you for your supportive words x your journey appeared so similar to mine with having delays etc.

Yes I agreed its hard to comprehend from a clear mammogram 2 years ago to a breast full of disease in total 84mm a combination of invasive ductal & DCIS but my consultant just says cancers can be unpredictable 

How are you doing now have you started your chemo . If so I hope all going well.

After phoning the breast nurses & secretaries nearly every day i now have a date 30th March for axillary clearance so today is a good day .

I keep forgetting on this journey there will always be blips and the waiting game is the hardest as you have to ride the storm but  there will always be good days to follow xx 

• So glad your finally getting somewhere with your treatment Mahem. Now hopefully you’ll find the rest of your journey will be speedy and you’ll be the other side of it before you know it.
• I’m now on my second week of my second cycle. It’s been ok so far. This cycle has been much easier than my first one. My white blood cell count plummeted in the second week of my first cycle and I was quite ill with it but this time I had injections to take to avoid that and so far everything is good. 
  
  I think the hardest thing is waking up every morning wondering what’s in store for that day. My Chemo and Radiotherapy will hopefully be over at the end of July. That seems so far away but then I remind my self that I’m already into my 5th week of it. please keep me updated with how it’s going and hope it all goes smoothly for you from here on. 
  
  take care, Janine. X

Hi Janine 

Yes believe me July will be here and its sounds like you are doing great x good luck !!! And yes will keep you up to date x

Maggie xx