Delayed diagnosis

Hi , I'm one of the volunteer community champions and am answering your post to "bump" it to the top of the list as it were. Welcome to  the community.

I'm sorry you've had   such a  delay in your mum  being diagnosed. You definitely have to keep pushing sometimes don't you?

It might be as well for you to repost in the Lymphoma group, as fewer ppl look in the Room  re new posts.  It'll mean you get support from people in a similar position to your mum.

Here's some general info re lymphoma , if it's useful - 

https://www.macmillan.org.uk/information-and-support/lymphoma

Hi ,

I am so sorry to hear about the situation that you and your Mum are in.  I'm afraid I cannot offer much in the way of personal experience, I have a totally different type of cancer and although there were some delays in my initial treatment (an operation) I was aware of what these delays were and why so was not dissatisfied with my treatment.

I was wondering if you had any news yet from the hospital about the type of lymphoma your mum has?   You would get more support on this forum if you were able to join a specific group.  In the meantime you might like to consider joining the Carers group.  If you click on this link it will take you directly to the group.  As was said previously the Room is not the busiest of groups and you will probably find more support in the carers group.

The Macmillan helpline is also very good both for emotional support and practical matters.  They can be contacted on 0800 808 00 00 although they are operating slightly different hours over the Xmas and New Year period.

Under circumstances like these there is absolutely no point in being polite and standing back and I think that you are doing the right thing in consulting with a solicitor and I hope that you have received some good advice from them.  I am aware that you would not want the hospital to have any opportunity to avoid responsibility but letting them know that you have sought legal advice might speed up any action that they might be considering for your mum.

Wishing you and your mum all the best,

Gragon x

Hi  I am Mike Thehighlander and I dropping in past from our Lymphoma (blood cancer) groups.

I am so sorry to hear about your mum and the time it is taking to get a clear Lymphoma Diagnosis and a plan out together.

This unfortunately can be rather normal for  lot of types of Lymphoma..... there are over 80 types of Lymphoma with each having to be treated differently depending on presentation.

I was diagnosed back in 1999 wit a rare Skin Lymphoma and it did take 12 months, a few CT scans and 6 biopsies to get a clear diagnosed - Lymphoma can be that hard to get diagnosed...... in my case the delay did not make a lot of difference to my condition and as I am taking with you now treatment worked well.

Blood cancers like Lymphoma need to be viewed completely different from solid tumour cancer and on the whole - regardless of stage are very treatable with great results...... but they must get a very clear type and stage to move this forward.

I do hope that you can get clear news and a clear plan soon.

We have a number of Lymphoma groups so once you have more info please come and join us as there is nothing better than talking with people who ha e walked the walk.

Always around to help out.

Hodgkin's Lymphoma

General Non Hodgkin's Lymphoma

Follicular Lymphoma

Diffuse Large B-Cell Lymphoma

Mantel Cell Lymphoma

T-Cell Lymphoma

Thankyou so much for getting back in touch with me. My mum has a large mass on her sacrum. The biopsy from that is showing as non hodgkins, B cell folicular!  A right mouthfull.  I am a bit confused as lymphoma is a blood cancer yet the biosy is from a solid mass!?   I am learning new stuff about this daily.  I know mum will have to undergo chemo and we are all dreading it to be honest.

Many thanks for getting back to me though  and glad you are doing so well.

Hi again so please go over and join our Diffuse Large B-Cell Lymphoma group.

Just follow the link I have created then hit the ‘Join This Group’ tab just under the main group name, then go to the 'Start a Discussion' tab and set up your very own Discussion and introduce yourself to the group and ask your questions.

Here is a basic guide to lymphoma.

Lymphoma is a cancer of the lymphatic system. The body is made up of cells that need to be replaced as they age or are damaged. This happens through cell division, which is when a cell divides and makes new copies of itself. Normally, cell division is carefully controlled. But sometimes this process can get out of control. Too many cells may be made and a cancer, such as Lymphoma, can develop.

In Lymphoma, our White Blood Cells called Lymphocytes become abnormal, these are the Lymphoma cells. Usually the body’s immune system destroys abnormal cells. But Lymphoma cells can avoid the immune system. This means they can keep dividing and grow out of control. Over time, there are enough Lymphoma cells to form a lump/mass.

The most common place for this to happen is in the lymph nodes.

But lymphoma can start growing in other parts of the body. Lymphocytes travel around the body. This means that Lymphoma can spread from where it first started. It can spread through the lymphatic system from lymph nodes in one part of the body to lymph nodes elsewhere. Lymphoma cells can also travel in the bloodstream to organs such as the bone marrow, liver, lungs and skin. The cells may then keep dividing to form a new area of Lymphoma.

Chemo and Radiotherapy are used to break down the lumps/growths and these are flushed out of the body - on the whole a blood cancer can not be cut out.

The treatment can be hard work but is do-able with great results.

I will keep an eye open for you over in the Diffuse Large B-Cell Lymphoma group ((hugs))