Fed Up

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Not happy.

1. Had a clear mid term PET.
2. End of treatment (ABVD) PET showed a small spot in similar location to before chemo although much reduced in size. Was told I had had a good response to the chemo.
3. Consultant and CNS told me I would next have radiotherapy to treat the remaining spot. (based on the scan results) I also spoke to the Radiologist and apparently this was indeed discussed as the next stage of my treatment.
4. However, then the MDT met and seemingly changed their minds and now want to do a biopsy.
5. Told this would be an EBUS procedure. And that a respiratory surgeon at the hospital had agreed to perform it.
6. Then get another call saying another change of plan and that my case needs to go to respiratory MDT for further discussion and very likely I will need a mediastinoscopy and that this will have to be referred to a tertiary hospital.
7. To make matters worse received a letter the same day as the call (6) with copies of my scan indicating the location of the proposed radiotherapy treatment.

Is it usual to see the nature of the treatment change so much? Frankly I have lost all confidence in the decisions the medical team have/are making and am considering a second opinion/ the private route.

Linda - Macmillan 3 days ago

Hi ChrisYorks

Thanks for getting in touch during what sounds like a frustrating time, I can see why you are fed up. I’m Linda, one of the nurses from our support line.

Unfortunately, there can be changes to treatment plans, the extent of this can vary depending on individual circumstances. And though it can affect your confidence in the process there are often good reasons for these changes to happen. After all you’ve gone through, the MDT will want to ensure that you are on the right pathway to give you the best outcome.

I’m not sure what has been explained to you about the need to have a biopsy now, and why a mediastinoscopy is being recommended over the EBUS procedure. However, understanding the rationale for the MDT’s recommendations can help you feel more engaged in your care. You can read about being involved in decisions here.

We would encourage you to speak with your haematologist or haematology nurse specialist if you have one. Let them know how you are feeling and ask if they can explain the changes to your care in more detail. Many people tell us that being able to voice their frustrations to their team directly is really helpful and it often open up further conversations to get them back on track.

You can seek a private or NHS based second opinion. Some people find a second opinion helpful and reassuring, whilst others find it confusing if it differs from the original plan leaving them with the dilemma of which recommendation to choose.

The key thing to remember is that having a second opinion can delay treatment. This is because plans tend to pause until the second opinion is given, and you decide what to do.

I see that Thehighlander also responded to you through the Hodgkin Lymphoma forum and I hope both our responses helped. If you would like to chat over this further, we would be happy to hear from you.

Take care for now.

Linda (Cancer Information Nurse Specialist)

The Macmillan Support Line offers practical, clinical, financial and emotional support. You can call us free from landlines and from most mobile phone networks on 0808 808 00 00, 7 days a week, 8am – 8pm or contact us by email or webchat.

Ref: LM/KA

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Fed Up