Hi, I don’t know if this is the best place to post, but I’m looking for some guidence on treatment. If you think best I’ll post in another section?
My sister was diagnosed with breast cancer in March 2011 and has since undergone a single mastectomy, chemo and radio. She received the all clear in January which was amazing news that she, my mum and I are over the moon about (underestimate). Since then, she has taken the decision to undergo prophylactic mastectomy and reconstructive surgery. <!-- ?xml:namespace prefix = "o" ns = "urn:schemas-microsoft-com:office:office" / –>
We met with the surgeon in May who advised a 5 month waiting list and met with him again a week ago… Things seem to have ground to a halt and I’m enquiring about what is typical with this process? They lost one of many referral letters and a recommendation following assessments. We had been told in May that her surgery would take place before the end of the year. Now we’re told they’re not sure when, the waiting list is 5 months… <!-- ?xml:namespace prefix = &quot;o&quot; ns = &quot;urn:schemas-microsoft-com:office:office&quot; / –>
My sister has just turned 30 and wants to get on with her life. The decision to have her remaining healthy breast removed is one that has come easy to her. She wants to go ahead with this surgery to reduce further risk and regain some of her confidence lost fighting over the last 18 months, but we’re concerned that the NHS seems to be now failing her - even though we are overwhelmingly grateful that they have got her to where she is now = cancer free!
Any advice you can offer or experiences you can share are really appreciated? We feel like we’re the only ones facing the stress and anxiety of dealing with Drs /NHS process. While we want to remain patient and understanding, we don’t know where to turn next?
This is a tricky one as the surgery which your sister is planning, is probaby considered ‘non urgent’ now that the cancer has been removed and even though she now wants to get on with her life, unfortuantely the NHS don’t always see things the same way.
Lots of ladies do have lengthy waits for their reconstruction and some slots are even cancelled at the last minute and yes, it is an anxious time as you feel as though your life is on hold ,until everything is complete.
The only thing your sister can do, is to keep contacting the PS’s secretary for some kind of time frame. She could also make it known that she would be available for surgery, should a cancellation arise?
I am sure lots of ladies will be able to share their experiences with you Yazz, but rest assure your sister is not alone in facing the anxiery, it is just that the NHS has a priorty to cancer patients and reconstruction is lower down the list of priorities.
I totally understand where you are coming from and have faced many of these frustrations and anxious times myself.
Fingers crossed your sister has her surgery soon, so that she can move on.
As Naz says, there is quite a difference in the reason for this surgery. To remove a tumour, it is quite rightly an urgent requirement for surgery. Preventative treatment like this is (also rightly) a lower priority.
Again as Naz says, check with the surgeon’s secretary occasionally, but try not to overdo it. The suggestion of short notice availability is a good one - surgeons hate to have empty slots or empty theatres.
I appreciate what you’re saying and do agree this is quite rightly lower priority than getting rid of the cancer.
Is there a typical wait time though, or does it depend on the trust/surgeon/hospital?
The frustration is more so, being told in May that the wait would be 5 months, that now (5 months on) they’re not giving us any more information (nothing has progressed).
Is there a way to see a waiting list for these sorts of operations? As you’ll understand it’s things like planning events, things with work and holidays that mean she’s just waiting on that date…
It is frustrating - especially after the speed of treatment on diagnosis.
I think the best thing is to contact the surgeon’s secretary to ask for indications, and maybe enquire if there is another surgeon she could be referred to if his workload is an issue.
