getting biopsy results

Dear Squeak

Thank you for getting in touch with Macmillan online community, my name is Pauline and I am one of the Cancer Information Nurses on the Macmillan Support line.

I am sorry to read that you and your husband are going through such a worrying time. I can see from your profile that you are also supporting other family members with cancer. Supporting someone with a cancer diagnosis can be very challenging especially when there is so much going on and when there are other members of the family also needing support.

Waiting for results can cause a feeling of uncertainty, which can be difficult to deal with. I am glad to see that you have joined a few of the groups on our online forum. Talking things through with people who have or are going through a similar experience can be really helpful.

The cancer waiting times were created by the NHS to ensure that people are assessed, diagnosed, and subsequently treated as quickly as possible.

The treatment team need to know how the cells are made to enable them to know how to treat or destroy the cancer cells. If they do not have all the information, there is a chance they could not be giving the best treatment available.

When a biopsy is taken the first thing they look for is what type of cells should this biopsy have, if it is taken from the lung they would expect to see lung tissue, if it has travelled to the lung from another part of the body, then they would expect to see cells that look like the area it came from.

When cells begin to change and no longer behave in the way they should, they can sometimes break off from where they are supposed to be and travel through the lymphatic system to other parts of the body. Due to the nature of cells, they are continually trying to reproduce, sometimes, during travel they continue to mutate, this can mean that by the time they reach the area that was biopsied it can be difficult to determine where they came from. This may mean that the treatment team may need to send the biopsy to other specialised laboratories for more information. On some occasions the cells can still not be identified, and the patient may need to have a repeat biopsy or other investigations to help identify the origin.

When the results of all the investigations are complete, they are sent to a multi disciplinary team meeting. The MDT will consider the results along with information such as the medical history and general health of the patient and come up with a treatment plan that is tailored to suit to their needs.

The patient will be asked to give informed consent, which means that the team need to ensure that the patient is aware of all the information needed to be able to consent to this plan of care.

Lack of communication from your husbands’ team can increase the anxiety and frustration.  Your husband may have been allocated a cancer nurse specialist. The role of this nurse is to support your husband throughout the diagnosis and treatment. The nurse is your eyes and ears at any meetings where he is discussed and is also his voice to put forward his views and preferences during any discussions. If a nurse has not yet been allocated, it may help to contact your husbands’ team and ask if one has been allocated to him.

You could also contact your consultant’s secretary and ask if the results of the biopsy have been received and if so, when will they be discussed at the MDT.

If you continue to have difficulty with communication and feel that you are not getting the answers you need, you could consider contacting the PALS department. You can reach the PALS team by calling the hospital switchboard.

Please feel free to give us a call on our helpline, 0808 808 0000 (7 days a week, 8am-8pm) or email us if you would like to discuss further.

 PG/MH

Best Wishes

Thank you Pauline. This is very useful.

Do they also test the tissue to see what drugs it will respond to? My friend had breast cancer some years ago and they sent the tissue to America to see if it would respond to chemo and it did. Do they do the same sort of thing for immunotherapy etc?

We have a Nurse Specialist within the respiratory team but she's been off sick for over 2 weeks. The other nurse is trying to chase things up though no one told us this until we phoned this week and of course she is probably dealing with a double workload. Even so, I would have thought an admin could have just phoned to say.

We don't have a cancer nurse specialist as yet. I suppose because they want to confirm the diagnosis from the biopsy first.

One of the frustrating things is we wanted to go on holiday but they told us we need to stay close in case they need him to go in. It all started at the end of May so we could have had a break by now and I think it would have done us both good.

Hey ho.... fingers crossed for some news by the end of this week.

Hi Squeak,

My name is Keith and I’m one of the Cancer Information Nurse Specialist

We hope you are finding the support from our online community helpful.

It’s good to hear that the recent reply by Pauline was also helpful.

Biopsies can give very detailed information regarding a cancer diagnosis from confirming the actual diagnosis. It also gives further detailed information into how the cells have mutated and how fast or slow growing they are (Grade). The biopsies can also confirm mutations that certain treatments may or may not respond to. So, using this information treatment plans can be greatly enhanced with this potential information.

For example, with melonoma targeted therapies can be used if tests carried out from the biopsy show that the cancer cells have a change (mutation)in a gene called BRAF. This mutation is present in around 50 % of all people with melonoma. Your husbands treatment team would be able to clarify if this is the case in your husbands diagnosis. This information would be used during the MDT approach that Pauline has already explained in deciding treatment plans. So, for example if this targeted therapy is used and the person doesn’t have the mutation the treatment would be pointless.

The test you are referring to regarding your friend who had breast cancer that was sent to America sounds like Oncotype DX test    which is a similar test but only used in breast cancer.

These sorts of treatment are relatively new and have enhanced cancer treatment in general. The benefit of these treatments is that they would treat the full body and not be directional in its effect to having surgery in treating secondary or primary cancers.

Regarding specialist nurse allocation, your right until treatment plans are finalised this may be the reason you may not have a specialist nurse allocated yet.

 If you are unsure always go back to the last consultant, you have been in contact with to confirm your husband’s situation and to clarify if he has a specialist nurse and how to contact them. During this time, it can be frustrating due to little information given due to treatment plans not being finalised.

On this platform it can be difficult to have a two-way conversation and to fully understand what you are going through.

If you’d like further explanation or have any other questions, please feel free to recontact us. By giving us a give us a call or contact us via our web chat platform.

take care.

Keith, Cancer Information Nurse Specialist

You can also speak with the Macmillan Support Line team of experts. Phone free on 0808 808 0000 (7 days a week, 8am-8pm) or send us an email.

Ref KM/PG

Thank you Keith. All very useful. I am the sort of person who needs information up front to process it. I am a detailed person with a lot of questions. I will certainly be giving your team a call at some point as I also process really well while talking. For now, still awaiting the biopsy results.