Breast cancer

Affected by breast cancer? Join this group to share experiences and ask questions to people who understand what you're going through.

It's in the detail.

Maizie52
Posted by

Is it petty for me to get frustrated over not having  the whole picture from the start.

i was diagnosed in April with DCIS early stages, was given options and went for a mastectomy as I didn't want radiotherapy.

operation end of April all went well, as per information. 2 weeks drain/dressing, 6 weeks prosthesis - home and dry.

long awaited test results from pathology all clear including lymph nodes - great ......but there are 2 more results to wait for.

seemed to take ages waiting for these 2 more weeks,, oestrogen at 8 positive and Her2 positive, now informed that I need chemo, herseptin injections and will be put on tablets for 5 years.

A few things have frustrated me during this process, but not made aware of these tests and their possible treatment has been the worst .

BiBi 44
Posted by

Maizie Really sorry to hear you now need chemo & tamoxifen. I had HER2+ & was forced to have chemo too, as you can’t get the herceptin without it. It’s hard to get bad news drip fed, even if there was no other way, because you just feel you’re coping then get something else thrown at you to deal with.  It felt like another set back to me. Take care of yourself xx

https://ificouldtellyoujustonethingcouk.wordpress.com/blog/

pat2
Posted by

Yes I agree , its all very frustrating and a rough road to travel.  I was never offered the choice of masectomy for a 25mm oestrogen positive tumour was told I would have lumpectomy. I am concerned as I had routine mammo and they missed the tumour , I found it myself. I said I would prefer more tissue taken as my health was more important than looks but they said not necessary.The cancer was  graded as a 1 then more tumour samples upped me to a grade 2 but lymphs were clear,which they often give chemo for. I was tested with an Oncotest and they decided that there was no point in doing chemo as hormone treatment and radiotherapy would suffice. Onco is no guarantee but an indication of how the cancer should be expected to react. I am now nearly 5 weeks post radiotherapy ( op early March)  and had wet peeling and raw nipple for weeks and signs of interior bruising and its hard to walk from pain and I have lymphedema in the breast because of radiotherapy damage and I am concerned about infection. No one tells you much about the treatments.

I agree the waiting is absolutely awful and so is the lack of info. I also find I get alot of contradictory information from different professionals which isnt good.  T he most recent being to massage the breast for lymphedema by surgeon and not to massage until radiotherapy damage settled by lymphodema nurse. Also told by clinic to come off Tamoxifen for 6 days and not to by GP anf Gyno re urethra pain and UTI.  It can be very confusing and makes you lose confidence. I do howeve have a nice breast nurse who is kind and professional and she told me about the 5 year tablets very early on at my first results appointment so wasnt a shock for me but she only works a couple of days a week so not always there for discussing all problems. 

I hope your treatments go well and you will be feeling better very soon. 

Take care.

xx

Maizie52
Posted by

Thanks for your reply.

I have started to feel that there is a reason for information not given.

 1 is nurses attending with consultants have a psychology degree and way up the situation on a clinic visit.

2 a psychologist has done in depth investigations into Women and their reactions to hearing they have cancer.

3 why give out detailed  information when it may not be relevant.

4 no matter  what is said about breast cancer women are still not strong enough to take everything on board from the beginning.

5 it's possible that giving the news to family and close friends and then going back to contradict your previous conversation is a way of making you feel and them that your news had a worst effect tHan was first thought.

6

give me time I'm learning fast, it may be too much to write in the first instance. Please feel free to add.

To share is good

xx

AnnJac
Posted by

I just wish they would tell us what we may need.  At my initial diagnosis I was told Mastectomy but unlikely to need chemo or RT.  Went back 2 weeks later when biopsies back and I needed everything!  So my list of questions was largely irrelevant.   

Anne xx

Maizie52
Posted by

Hi AnnJac

I totally understand, my daughter came with me and my husband on clinic visits, when I was told that I would need chemo at the last breast clinic  my husband was so thankful she had been with us, otherwise she and our son would be thinking we hadn't listened properly or asked the right questions.

when you have family it totally involves them for support, planning and help.

keep well