Hi all. Not really sure why I’m posting but just feeling pretty hopeless and worried for my partners state of mind.
she was diagnosed with breast cancer in August after finding a tiny lump in June. She was continuously reassured that the lump was nothing to worry about but that a biopsy would be done to air on the side of caution.
She was called back for results in August to be told to everyone’s bisbelief that it was indeed cancer but that it was small, hormone rceptive and treatable and scheduled for a lumpectomy in September. Again she was reassured that this would rectify the issue and radiotherapy could then commence. The breast care team saying she would look back on this as a “minor inconvenience”.
After a 4 week wait she was called back for results only to be told that margins on 2 sides were not clear so another lumpectomy would be required. 5 weeks later (yesterday) she was called back only to be told the margins are still not clear and that yet more surgery would be required.
I understand that (from what we are being told) only 3 lumpectomy surgeries can be done before a mastectomy is required. She basically took this news terribly and ran out of the hospital before further discussions could take place.
the initial tumour was under 1cm in size and it feels like we are being given overly positive d prognosis at every appointment at the hospital only to be hit with massive bombshells at every subsequent meeting.
my partner is now thinking very dark thoughts with talk of refusing any further surgery or worse ending her own like. We have 2 very unhappy children and I am extremely worried for her well being and for the future of our family.
I feel we are not being given honest evaluations by the care team and it’s almost like they only want to give positive news and almost downplay what we are actually dealing with which is only making further bad news harder to take.
The way the whole saga so far has been handled has been pretty terrible to be honest. For example the hospital sent out the wrong letter post biopsy to say they needed her to come in for further tests so attended that appointment on her own only to be told the devastating news that she had cancer… on her own… after continual reassurance that the lump was “nothing”! The way the surgeon broke the news was also appalling in that he didn’t say a word only stated at her for what felt like agonising minutes with pitiful eyes… to the point where both my partner and the nurse were almost shouting at him to just break the news!
after the 2nd op she wasn’t even given a bed or a reclining chair in a recovery room but instead sat in a chair in a corridor whist being sick on the floor! I was waiting at the hospital but wasn’t even allowed to sit with her or see her! Even the breast care team were disgusted with this and told us to submit an official complaint!
the 2nd op they said it was only a 1 in 20 chance that this had happened, this 3rd time a 3 in 100 chance. We are now at the 3rd and final lumpectomy and to be honest she has lost all faith in the particular hospital and care team and we has booked for a consultation with a private surgeon next week (not sure how we can afford to go private but money seems trivial at the moment and will get in whatever bent is needed to try and move this forward.
has anyone got any experience with private treatment or even requesting to be transferred to a different nhs hospital?
also has anyone got any recommendations for emotional support services I can try and get her to access, although at present she refuses to seek help.
apologies for this lengthy rant/vent but we are at a loss and struggling to know which way to turn. She is only 42 and we have a 5 and a 7 yr old
it looks like this will end in a full mastectomy now which feels so drastic for a stage 1 tumour that was under 1cm in size. I feel this has been handled very poorly and the constant 4-5 weeks wait for pathology reports are agonising bearing on almost torture. If she had been given a more realistic picture from the start I feel this would have been easier for her to come to terms with but instead she has been continuously told that this is nothing more than an inconvenience
Hi SUTC and a very warm welcome to the online community which I hope you'll find is both an informative and supportive place to be.
I'm sorry to read everything that you and your partner have been through and it sounds like she's had a very hard time.
As you know, the online community is divided up into different support groups and I can see that you've already joined and posted in the breast cancer group, which is the best place for you to connect with others who may have had a similar experience to your partner.
When you feel up to it, it would be great if you could put something about your partner's diagnosis and treatment so far into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.
"Never regret a day in your life, good days give you happiness, bad days give you experience"
