ANGRY, Frightened, Tired of Waiting to Hear More Bad News!

I had my screening scan on 4 July. First biopsy just over two weeks later.  29 July was told I have lobular cancer.   Met surgeon 17th August.  MRI on 27th August.  Second biopsy on 5th September.  Met with surgeon again on 21st September. I thought it was for a surgery date.  No. She informs me enlarged lymph (enlarged 3 years ago at previous scan) is “suspicious” for lobular AND that the blood test she ordered on 17th August came back “very high” for cancer markers.  She mumbled something about maybe I don’t need surgery for the primary tumour and maybe the blood test isn’t entirely accurate … although she is clearly convinced it is.  

 

So now it looks like I have Stage IV cancer.  Had a CT scan on the 21st (thanks to a friend who works in radiology at the hospital) and I have a bone scan this Thursday.  Just got a call the next meeting with the surgeon is 10 October when she can tell me the bad news.

 

It will be over THREE months for the NHS to get to the end of their diagnosis steps to tell me I’m on borrowed time with cancer.  Never mind I have no idea if and when I’ll get to see an oncologist. My enlarged lymph node was enlarged three years ago.  Why the heck didn’t it get called out at that time as something that need further investigation!!! I might have had a chance then of getting rid of the cancer and not as I suspect being told I have to live with it and spend the rest of what will be a shorter than expected life trying to keep it in check. 

 

I have gone from being told at my first follow-up by the ill informed doctor at the Jarvis screening centre  that all I would need was a wide area excision and radiation and I’d be all done.  The surgeon squashed that on my first visit and told me possibly breast sparing surgery.  Now it looks like no surgery at all.  EVERY step of this I’ve got bad news. I feel as if the NHS is trying to torture me, I really do. 

 

My husband died on 3 August after I cared for him for seven years.  And now, BOOM … it’s my turn to march down that road, although mine will likely be shorter!  Only no one is around anymore to care for me.  

 

 

 

 

Stacey, I didn’t want to pass this post by, though I’m not sure I have anything to say that will help you greatly. I’m not surprised you are feeling incredibly let down and the system has certainly seemed SO slow for you! I think your concerns and feelings need voicing more audibly to be honest, and I think ringing your BC nurse to say that you’ve simply had enough of the timescale and need answers now…and need to know what your treatment plan is NOW, might be one way to go. I think the chain of events needs explaining and your extreme disappointment (to put it mildly!!!) needs addressing. You are going through torture, albeit not deliberate, but extremely and devastatingly cruel through a lack of their pushing things on quickly.

I don’t know if it’s also worth ringing the ladies on the phone line here, they could point you in the right direction of  assistance as maybe a complaint is necessary?

 

Charys x

How awful for you waiting for what must seem an eternity.definitely ring and complain.I found my lump, was at my surgery next morning, mammogram and ultrasound and biopsy five days later when I was cautiously diagnosed.confirmed nine days later when I was given a treatment plan.chemo started a week or so later and surgery pencilled in for late October.Also discovered kidney cancer after scan and already seen urologist and had a biopsy.you should not have to endure the pain of not knowing.x

Hi Stacey

I am so, so sorry to find out about your process of diagnosis - it is truly challenging for you. My heart goes out to you. I so hope that somewhere along this process there is some teeny, weeny bit of better news.

I am truly surprised and a little shocked to hear about the length of your diagnosis. It is well outside NICE guidelines! Of course, there are many processes, tests, scans to arrive at a more final diagnosis - without having the pathology results from an operation - but still - it is putting you through a lot more distress, than necessary.

May I suggest to talk to your breast care nurse, whether she/he can urgently refer you to counselling?

Apart from dealing with what has happened so far - it may also help you with whatever there may be to come. You are on your own through a most distressing time - and they really can help.

HUGE HUG

and hoping with you.

Sue xx

So sorry to hear of your experience, Stacey, what a nightmare after all you’ve been through.

It certainly reads that this needs to be taken further. In addition to what Charys Treeze & Sue have said, it might be an idea to contact your local PALs (patient advice & liaison - will be on the hospital Trust website), who can support you in making a complaint if you feel you need to do so.  

It does raise questions about how the service was organised in your case & you need answers.

Does your Trust refer all new patients for discussion at a ‘multi-disciplinary team meeting’ (mdt), where the whole team involved in the diagnosis & treatment of bc make recommendations for the plan? 

This was my experience & the whole process did feel very streamlined, although this is no consolation to you at this difficult time.

You certainly don’t need this, sending hugs & very best wishes.

ann x

 

  

Stacey, like Charys I couldn’t pass this by. What you’re experiencing is too awful to believe. Ann is right and PALs may be a good place to go. I don’t know where the Jarvis is but I wonder if it’s worth a call to the support line on the forum to see if there is an advocacy service close to you, or if you can access a Macmillan nurse/advocate? Stacey, i wish we could all be with you physically as well as virtually xxx

Hear hear x

Stacey you’ve been in my thoughts a lot today. I’m so hopeful you can find an advocate to support you through this. Xxx

You have so many people on here who are feeling your pain Stacey but do really care even if they cannot change the situation. You’ve been through so much and it’s overwhelming at the moment and so much to take in. Keep strong! How all this has happened is unbelievable and you must be so angry with being treated this way. Sending a big hug too because it sounds like you need it at the moment. Keep posting so we can hear how things are going. Sue x