My 17-year-old daughter was diagnosed with Hodgkins Lymphoma yesterday; we had concerns a year ago and it has taken 12 months, even the consultant apologised for this, we are petrified this may have spread, we are due a call from Marsden on Monday. How do you cope with the anxiety of not knowing, but then when you do know, how do people manage to get through the days. I wish anyone affected a speedy recovery and the best to you and your families.
From heartbroken parents
Hi Perch73 and warm welcome to the Macmillan Community although sorry that you had to find us and especially sorry to hear about your daughters Hodgkin’s Lymphoma diagnosis.
I am Mike and I help out around our Lymphoma groups.
I don’t have Hodgkin's Lymphoma but I was diagnosed way back in 1999 at 43 with a rare (8 in a million) incurable but treatable type of Cutaneous T-Cell Non Hodgkin’s Lymphoma (NHL)……. eventually reaching Stage 4a in late 2013 when a second, also rare (4 in a million) type of aggressive Peripheral T-Cell NHL was then presenting so although my Lymphoma ‘type’ my be different I most definitely appreciate the challenges of this journey rather well.
It is a stressful time for everyone involved but once a plan is put into in place and treatment started things start to calm down…
It took over a year and 6 biopsies for my first NHL to be diagnosed…… in Lymphoma this is not that unusual.
Lymphoma is the 5th most common type of cancer in the UK (after breast, lung, colon and prostate cancers) so lots of treatments are available and compared to many other cancers the treatments available do lead to very positive outcomes.
Lymphoma can spread anywhere in the body but it remains very treatable….. The Staging in Lymphoma is rather different from solid tumour 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.
Staging in Lymphomas identifies…..
1) Where the Lymphoma is presenting in the body (it can be anywhere)
2) What is the best treatment approach and best treatment type for your presentation
3) How long your treatment needs to be.
Community is actually divided into dedicated Support Groups (Discussion Rooms) so can I recommend that you look to join and put up your own post in our dedicated……..
…… support group. This group is a safe places to talk to others with a similar diagnosis, treatment experience, to ask questions and get support.
Click to n the link and when the group page opens you will see a [Black - Click to Join - Banner] at the bottom of the page, click in this box and this will then confirm that you have joined the group.
When you are ready……. you can introduce yourself by putting up your very own post by clicking [+ Create new post] or [+] in the top right of the group page.
You can copy and paste the text from this post into your new post.
I will keep an eye open for you but if you are not sure what type you have pleased do get back to me on this post and I will help you out further.
Hi again Perch73 …….. the word cancer in any form does naturally bring a sense of despair and if we were talking about many of the other ‘top’ cancers this would definitely be the case…… but Lymphomas like her HL is not a death sentence.
There are over 60 types and sub-types of Lymphoma and even the very rare types, like my 2 types are eminently treatable.
Way back in 1999 the then median survival rate for my first type of NHL was set at 3-5 years on all the information I was given.
Our 2 daughters were 14 and 18 back in 1999……. but we went on to see our daughters graduate, get married, set up very successful businesses and provide us with 4 beautiful granddaughters…… I am now over 10 years out from my last treatment, I tuned 70 back into in Nov last year and I am living a great life.
Your daughters HL is very treatable and the initial aim is to cure.
Over the past 7-8 years while I have been helping out on this community I have talked with many folks on our dedicated Hodgkin's Lymphoma group who have been through treatment and are back living full lives….. a good number of the women did not have time to look into egg freezing but still went on to have family,
You may find these 2 links helpful as you navigate these early days.
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