What do I do

Hi Crochetgirl49 and a warm welcome to this corner of the Community although I am always sorry to see folks joining us. I am Mike and I help out around our various Lymphoma groups. 

I was diagnosed way back in 1999 at 43 with a rare, incurable but treatable type of T-Cell Non Hodgkin’s Lymphoma (NHL) eventually reaching Stage 4a in late 2013 so although my Lymphoma ‘type’ my be different I do appreciate the challenges of this journey rather well.

ALCL or Anaplastic large cell lymphoma to give it its full name  is actually another type of T-Cell NHL but unlike my type of Low-grade non-Hodgkin lymphoma that is slow growing so it took a number of years for me to have full on treatment ALCL is High-grade non-Hodgkin lymphoma so normally treated rather quickly.

Until you have a clear diagnosis it’s all a guess as to what of the many treatments you may have, there are lots of options and on the whole these are very effective.

At your meeting you will most likely be given a Staging for your presentation……. in Lymphoma staging is rather different and unlike most other cancers like Kidney, Lung, Breast….. where a high stage number like stage 4 is a poor prognosis, in Lymphoma it’s not. I was stage 4a back in 2013 and it made no difference to my outcomes.

The main thing you need to do is be ready for your next appointment so this link Questions to ask your medical team about Lymphoma will help you list your main questions down in a note book….. and could I strongly recommend you take someone with you to the appointment as you may well get a lot of information so two pairs of ears will take more in.

On e you know the exact diagnosis and treatment plan do come back to us and we can give you more specific help….. but if you have any other questions in the Jean time do ask them and we will help you out as best as we can…… the important thing to remember in all this is that Lymphomas is very treatable ((hugs))

As someone who's recently gone through a similar experience, I too told my closest friends but not my family (2 adult daughters) until I was at the same stage as you and I could definitely tell them I had lymphoma. I would honestly recommend this as it suddenly felt like a weight lifted off my shoulders and they both wanted to come with me for the results/treatment appointment. 

I'm glad I did it at that stage because, as Thehighlander mentioned, it's a good idea to have someone else taking notes so you can listen and ask questions - and they were able to ask questions too. After the appointment there were so many things I'd forgotten but one of them always had it written down. 

Whatever you decide, I hope the appointment tells you everything you need to know and all best wishes to you.

Thanks. I might tell my parents at the weekend since the results appointment is on Tuesday. 

I haven't told the parents yet, but I do have a friend going with me to the appointment now so at least I'm not going to it on my own now. 

Sorry to hear of all this. However, a friend is a great comfort in such times of uncertainty. As to notifying others,that is an intensely personal decision. When you do tell, you might be surprised at who steps forward to lend a hand. However, there can be a tendency for others to "smother" us with assistance, so that must also be borne in mind. If it indeed is ALCL, there is a blessing even in the bad news. Firstly, that it is not lung cancer. Secondly, ALCL is the type often associated with breast implants - unknown exactly why, but it is certainly not limited to that group. Fortunately, there is an approved drug named Adcetris which targets a specific protein on the surface of ALCL cells. It has been quite effective and has improved outcomes substantially. It had been approved for just over 10 years now. It may or may not be best for you, so this is a good subject to discuss. 

All of this will make more sense as time passes. Once the diagnosis is confirmed, please consider reading up on ALCL and its treatments so that you can be in step with your medical team in the decision-making process. In the meantime, hoping and praying for the best for you.