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Suspected lymphoma- sister(17 Posts)
My sister is currently waiting for a biopsy date for the multiple lumps in her neck and also another under her armpit. She had an appointment with a haematologist who said it was alarming how quickly the lumps have grown and he is rushing it through.
Just looking to hear from anybody with any experience in this. I feel sick/anxious/depressed with the thought of it so can’t imagine how she feels. I don’t know what to say to her without her realising how worried we all are. She’s only 24, a single mother with a 5 year old, just so worried and scared
What a worrying time for you.
I don’t know much about lymphoma (my blood cancer is leukaemia) but from what I know:
a) don’t google! There have been huge advances in the treatments of many blood cancers, but there is still a fair amount of older (and scarier) information out there online.
b) as the urge is irresistible, google responsibly - stick to Bloodwise, CRUK, Lymphoma Association, and Macmillan
c) many forms of lymphoma are very treatable now. You really do need to wait for the test results before knowing what you’re up against
d) the detailed tests (where they have to grow cell lines) can take 3 or so weeks for results. That’s standard and there is nothing that can be done to speed it up
e) this bit, where you are in a horrible limbo, knowing there is good cause for concern but not knowing what is up, is one of the very worst times there is. Even if the news is bad, knowing what you’re up against and what they want to do about it, can be easier than the uncertainty
f) be left by her. There are times when I want to offload everything and wallow in tea and sympathy. There are days when gallows humour hits the mark. And there are other days where I just want to forget I am ill. And there are many more permutations. So be responsive
@iVampire thank you very much for that and I am so sorry to hear about your diagnosis it must be really hard. I hope everything is in hand, I’m so stressed and worried about my sister so couldn’t even begin to imagine what it’s like for somebody going through it themselves.
Yes I agree with you on the waiting and not knowing. We knew it probably wasn’t going to be good news and the doctor didn’t think so either but the GP did not take it seriously at all which is really frustrating as things could have been done much more quickly.
I'm sorry you're going through this OP. My brother had Lymphoma, but actually died from an extremely rare (something like 3 occurances worldwide annually) complication to do with treatment. The doctors breezily said that if it had just been the Lymphoma, he would have made it. My manager had it years ago and hasn't had any ill heath since. Treatment is successful for a lots and lots of people.
Hi @anon189, your thread is a few days old so things may have moved on.
I was diagnosed with Lymphoma about 18 months ago. After excellent care , chemo and radiotherapy , I am in remission and life is pretty much back to normal.
I will say, my sisters were such a great support to me through it all, and it sounds like your sister has the same.
Hope all goes well, but try not to worry, she will need you to be the calm one .
I don't have experience with lymphoma, but have some experience of close relatives with cancer. I just wanted to say to ask her how she is feeling and assess whether she wants to talk. Make sure she knows that you will support her through treatment, including looking after her child whenever she is not well enough to.
She presumably knows this is potentially serious, and so I don't think you need to fake breeziness for her. Just try to let her know that you will be strong for her (but hopefully you have other people who can support you).
@dreamersandwishers thankyou for your reply and im so glad to hear you are in remission. She has just had her biopsy today and they basically told her they know its cancer and are just determining the stage. She has a CT scan next week and I just hope and pray it is going to be alright. I hope you dont mind me asking but what stage was your lymphoma? Im just struggling so much right now, I feel so bad as my anxiety and panic attacks are out of control at the moment and I can barely function and its not even me going through it!!
Hi @Anon189, I was at stage 2. Lymphoma was in my tonsils and surround lymph tissue. It was DLBCL with complications
If you want to pm me I can tell you more, although for more accurate info , I found the Lymphoma Uk website good.
@dreamersandwishers thank you. Can I message you when we know more. She has had her biopsy and has a CT scan this coming Thursday. So worried
My DH has lymphoma (stage 4 follicular NHL) and is in partial remission after six cycles of chemotherapy three years ago. He's back at work and as well as can be expected, on regular scans and checkups, living his life as best he can. It will probably come back and there's a plan for this.
Try not to catastrophise (I know this is really hard) until the thing is diagnosed, categorised and staged. Whatever the news, once there's a plan it will be easier.
Love and strength to you and to her. PM me if I can help.
there are many forms of lymphoma.
many a well treatable, some are utter bastards. don't speculate until you know more.
there are some new treatments and clinical trials that could be helpful.
concentrate on your lovely sister and dn.
I have one relative who lives well with lymphoma 20 years after stem cell transplant.
Hodgkin's lymphoma stage is irrelevant. DH had stage 4b 4 years ago. Full remission after standard chemo protocol as his was very chemo responsive - and is back to full fitness now - did a 50 mile charity hike 1 year after chemo finished!
Typing is the key - and I suspect treatments have been improved even since he had it...
@Anon189 . Of course. I truly hope usually don’t need to but happy to help if I can. Best wishes for Thursday, and the long wait until then 💐
@RedRosie thank you and glad to hear your DH is doing well.
@randomsabreuse So happy to hear your DH is in remission
@Dreamersandwishers, thanks, she went to the hospital on saturday for chest pains and they also checked her breast and found multiple lumps. She asked if they think its lymphoma and the doctor told her most likely and when she asked if its curable he told her hodgkins is but non hodgkins not so much!!
Non Hodgkins lymphoma (this is what my DH has) can be cured at early stages, and can definitely be treated (as my husband's has been). Do wait until it has been typed and staged before catastrophising. I do know how hard this is!
@Anon189, that’s a tough thing for a Dr to say to her. Mine was Non-Hodgkins , and my Consultant was pretty optimistic that i could be cured.
I am pretty hopeful too.
Still until they can tell her types and stages, try to stay positive. Fingers are firmly crossed here for you both.
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