Feel stuned

On Friday my surgeon told me the cancer was bigger than he thought, I don’t know why, but I felt like I had been hit round the back of the head with a cricket bat. I’ve been very pragmatic up till then, but I just felt stunned. He also said I would be having chemo before radiotherapy, due to the size. I was not worried about having chemo or radiotherapy, but I now feel like I’m losing control of what’s happening, it’s not a good feeling for me.

 

I’ve also had to chase up to get an appointement with an oncologist as I was told, for some unkown reason I had not been put on the system again. My CN told me today I would see the oncologist now approx 17th September and should start chemo at the end of September, beginning of October,with luck, although it’s still not certain, that’s eight weeks after surgery, seems an awful long time and I don’t know what comes before chemo, but I’m reading up on it.

 

My darling husband is holding my hand all through this, but at the moment, I feel like I’m falling from a mighty height and it’s frightening me.

 

 

oh pinklily,

 

You sound as if you really need someone to 'pull it all together ’ for you, so that you can make sense of what is happening.  Telling you ’ the cancer is bigger than he thought ’ is not the way you need to hear things.

Maybe one of the other ladies will come on and be able to point you in the right direction of who can help you with this  -  this is not a time for you to have ‘vague comments’ or lack of order from the professionals you need to rely on.

 

I reallly sympathise.  My instinct says your BCN, or maybe the specialisist oncology specialist nurses?  

 

Sending you a hug, but you need more than that - good that you have a fab hubby xx

Dear Pinklily

 

I echo what Paulus has said. It sounds as though you’ve received really poor treatment and need clarification.

 

In your situation, I think I’d phone the BCN and make an appointment to see her face-to-face, before you see the Oncologist. Then be frank with her about how you feel, and ask her to talk you through the details.

 

From your post, it seems that you’ve already had surgery. Didn’t the Surgeon tell you the pathology results, which should have been through c. 3 weeks after surgery? He/she should be able to tell you the size of the tumour removed, the grade, whether ER +ve or -ve, and whether HER2 +ve or -ve. I would ask your BCN about this and request a copy of the report your breast surgeon will have sent/will send your GP.

 

As far as I know, it’s not unusual to wait for 8 weeks after surgery for adjuvant treatments to start. The wounds need to heel well before you have post-op treatments. If you’re having chemo, that usually comes first, followed by radiotherapy if you’re having that. Hormone therapy, if that is on the menu, can go alongside radiotherapy. Your BCN should be able to tell you the programme.

 

In my case, my pathology results took 3 weeks to come through. Then there was a Multidisciplinary Team meeting about the results (Surgeon, Oncologist, Radiologist, BCN) to discuss treatment recommendations, then I had an appointment with the Surgeon to discuss the results, followed a week later by an appointment with the Medical Oncologist to discuss the treatments and give my consent. As I declined chemo, I was then referred on to the Clinical Oncologist (Radiologist) and was immediately started on hormone therapy as I was strongly ER+ve.

 

Had I accepted chemo, that would have come first before rads and hormone therapy, but there would have been a wait. I was still having problems with my axilla wound which kept leaking serum. This meant extra surgery 5 1/2 weeks after the original WLE and axillary node clearance. I had a further 4 weeks to wait before radiotherapy started, to allow for complete recovery of the wound site. So, rads didn’t start until 9 1/2 weeks after the main surgery. Had I had chemo, that would have started about then, and rad and hormone therapy would have waited until after chemo.

 

Every patient is unique, so you need to have your own programme outlined to you. Be firm with them and don’t be afraid to tell them if you feel swamped by the situation.

 

You could also ask the BCN which websites she recommends for reliable information. I was directed to Breast Cancer Care, Cancer Research UK and Macmillans, all of which are very comprehensive and trustworthy. There is a great deal of misleading rubbish on the www.

 

I do hope things improve for you soon.

 

Hi pinklilly
Chemo needs to be started within 12 weeks after surgery, so there is plenty of time.
Use this time to rest and recover from surgery. Drink plenty of water and carry out the daily exercises.
In terms of planning, have a think about eg, work, childcare etc. Prepare for days when you won’t feel up to much. Maybe think about getting your hair cut short if not already.
These are all very practical things of course. But just give yourself time to heal.
Best wishes
Sue xx

Hello Pinklily,

Thank you for your detaiked response regarding the hormone treatment. I think some people will find it useful.

I totally agree. We may arrive at different conclusions but what is important is not that we agree but that we make informed choices that are suitable for us as individuals and that we are very comfortable with. One size does not fit all, as the saying goes.

I hope the rest of your treatment goes well and wish you and your famiky all the very best.

Regards, Chick ? X