Starting to worry after allergies to treatment and conflicting/missing information on my medical notes

  • 4 replies
  • 275 subscribers
  • 540 views

Hi,  I'm 42 and was diagnosed with Grade 2 IDC. ER 8. PR 8, HER2 positive on 1st December.

I was prescribed 6 rounds of chemotherapy (Docetaxel) with hormones (Phesgo) 3 weeks apart and a full mastectomy and reconstruction in about 5 months time.

I had my first round of chemotherapy on 8th January.  But 0.4ml into the 20ml bag I had anaphylaxis and treatment was stopped.  I did have the Phesgo hormone too. 

On 9/1/23 I had a phone call from oncology to say they'd change my chemo to Abraxane from 31st January and steroids by AV and continue woth 3 week cycles.  So another 3 weeks with no chemotherapy in my system.

On 16/1/23 I phoned the oncology helpline about symptoms I was experiencing (fatigue,  nausea,  nosebleeds and a rash all over my body). They asked me to go in for tests. Blood tests came back clear and I was told I'd had an allergic reaction to the hormones administered on 8th January. 

What's worrying me is that the oncology registrar i spoke to on 16th January said there was no record on my file that I'd had an allergic reaction to the Docetaxel on 8th January.   She also told me it was logged that I'd had the full 20ml bag of Docetaxel, I didn't. The nurse showed me the full bag and told me I'd only had 0.4ml and therefore shouldn't need the anti nausea tablets.  The oncology registrar seemed to believe that I've had 20ml which I told her is incorrect. She asked me if I'd been given any medication to take for 2 days following the allergic reaction. I hadn't.

I've just seen a letter from my Oncologist to my GP dated 20th December stating I have G3 IDC. ER 8. PR 8, HER2 positive cancer.  A different grade to what I was told on 1st December.

I went into this feeling full of confidence but now I'm really worried.   

  • I'm worried that the medical professionals think I've had a full round of chemo when I haven't.   Will my round on 32st be round 1 or round 2 as they think I've had a full bag of chemo on 8th January?
  • I'm worried that it will be almost 2 months to the date of being diagnosed that I'll have my first real cycle of chemotherapy on 31st January. 
  • I'm worried that the medical professionals haven't updated my files/notes properly 
  • I'm worried that my cancer grading is different on different letters. Does this mean my cancer has moved from grade 2 to 3 whilst I've been waiting fir treatment?
  • I'm worried that whilst all this is going on my cancer could be spreading.

I don't really know what I'm hoping to gain from this post.  I don't want to worry my lived ones about my anxieties but  I also don't want to sit back if there's something proactive I could do about this?  I don't want to be wasting professionals time or coming across rude by questioning them.

I have a phone appointment booked with my Oncologist on 26th January.  I'm seeing my GP tomorrow.  I just feel like I've spent 2 months with Jo treatment whilst the cancer has potentially shifted from grade 2 to 3 and possibly spread.

Am I over worrying?  Is this normal?   Pre-cancer I never got sick, rarely had colds etc so I'm not used to dealing with medical professionals so I don't know what's normal practice and what isn't.

Any advice would be greatly appreciated Pray 

  • Hi, I would suggest you get in contact with Pals at your hospital. This needs to be investigated, Pals can give you advise on how to best solve your concerns. You can phone and speak to Pals. 

  •    thank you for your reply.  I've not heard of Pals before but I'll look into this.  Thank you.  

  • I empathise with your confusion. If you read my profile all the way through you will see I was given conflicting information even at the end. I had my daughter throughout and thank goodness because several months in her questioning revealed they weren't treating one of my tumours. I think having someone there with you, especially at oncology and surgeon appointments is very helpful, almost essential. As the patient you are too poorly and exhausted to have the necessary energy to question properly plus because the people giving the treatment are so nice you also don't want to be critical or unsupportive of them ( Yes I know that is ridiculous but gratitude for our treatment is part of most people ' psyche as is fear of you criticise your treatment might be negatively impacted).

    It is disgraceful probably dangerous that your notes were not properly up to date and correct. I support the NHS respect and admire it's workforce. Believe they are badly treated but as the patient what ever the mitigating circumstances you should have and demand excellent care.

    Very good luck, you will come through. I did xxx c

  •    thank you so much for your reply.  I'm sorry to read that you experienced conflicting advice and care.

    You hit the nail on the head when you said the medical professionals are so nice and you feel so grateful for the treatment.   I'm scared of them thinking I'm being rude.  But as my boss said, this is my health and I need to question it. Humans can make errors.

    I spoke to  my Gp yesterday who was clueless but said I need to raise all of this with my MacmillanNurseand Oncologist.

    I've emailed my Macmillan nurse listing all the concerns I have and I'm speaking to my Oncologist on Friday. 

    I usually have someone with me at appointments but was told I couldn't take anyone to chemo with me so noone witnessed the allergic reaction etc apart from staff and other patients 

    Hearing your story and that you got through it has given me some hope though. So thank you. Sparkling heart wishing you continued good health and recovery xx