Hi Everyone,
I’ve had a recent diagnosis of Hodgkins Lymphoma with a fairly large Mediastinal mass. I have been referred and waiting PET and contact from the haematology department.
My question is whether anyone here has had fertility preservation prior to chemo treatment and indeed before a PET scan?
I don’t want to delay finding out my staging but I haven’t had any clear advice medically around fertility and risk from damage with the PET scan.
Any advice/experiences would be very much welcome.
Thankyou
Hi ManifestingPositivity and a warm welcome to this corner of the Community although I am sorry to see you joining us. I am Mike and I help out around our various Lymphoma groups.
I don’t have Hodgkin's Lymphoma but I was diagnosed way back in 1999 at 43 with a rare, incurable but treatable type of Low-grade non-Hodgkin lymphoma eventually reaching Stage 4a in late 2013 so although my Lymphoma ‘type’ is different I do appreciate the challenges of this journey rather well...... although obviously I have not had to make decisions about fertility preservation but let's see if there are any members who have had to deal with these challenges.
There have been a few women come through the group who did not have time to go through fertility preservation and went on to have treatment including Stem Cell Transplant and still go on to have family.
There is indeed potential for cell damage and mutations in egg when having a PET scan. The target organs of the isotope in the examination may receive the majority of the radiation dose, however, the amounts used are strictly controlled and regulated to use the least amount necessary for the purpose of imaging so you do need to look for clear answers soon.
You may also want to use the Lymphoma Action helpline on 0808 808 5555 where the team will be on hand to give you some support and will have come across this question before - open every week day from 10 till 3. Lymphoma Action is the only UK Lymphoma Specific Charity who have lots of good reliable information, videos etc.
There are a number of women on the Lymphoma Action Support Platforms who have also navigated this journey as well.
They also have a great Lymphoma Action Buddy Service where both patients and carers/family can be linked up with someone who has walked the same treatment journey. They also have a Lymphoma helpline on 0808 808 5555 where the team will be on hand to give you some support - open every week day from 10 till 3.
You may find this link Questions to ask your medical team about Lymphoma helpful as you get ready for your appointment with Hematology.
Always around to help more or just to chat.
Hi again ManifestingPositivity and I do like your community name and keep living in that thought.
As much as this is all challenging, confusing, frustrating……. this can be overcome……
If you know the hospital where your Heamatology department is I would get on the phone first thing on Monday and explain your concerns and the need to get things moving.
THIS LINK will take you to lots of stories from people who have navigated the Lymphoma roller coaster...... you may even see me as well ((hugs))
