It wasn't ovarian, it was lymphoma

[Ohjoyohbliss]

My original thread is nearly full, hence starting this one.

I knew I probably had cancer in late July 2025 but it took until the end of August to get a definitive diagnosis: Diffuse Large B-cell Lymphoma, Stage 4.

I have had six rounds of chemo, the last of which was on 12 December. Had a lot of nausea and vomiting, plus an infection which left me hospitalised on oxygen and IV antibiotics for a while. I am extremely weak now, and waiting to find out whether the cancer is still active. (A scan at the half way point showed it was.)

Obviously things will be very different in 2026 and go one of two ways, depending on the scan result, which I will find out on Friday 16th January.

Previous thread:
https://www.mumsnet.com/talk/cancer/5382361-likely-ovarian-terrified-anyone-available-for-a-hand-hold

(Not sure why that takes you to the middle of the thread; sorry.)

Blood test results from Tuesday: my neutrophils were up to 1.62! This is on the low side of normal but much, much higher than they have been since the lymphodepletion chemo.

Seems that they are coming back naturally and so hopefully I won't need GCSF injections. I'm so happy about this. I mean, they may drop again - I was told a week or two ago that they had got up to 1.4 but then dropped back to 0.7, but the highs are getting higher so hopefully the lows will be higher too. Once they are consistently above 1.5, I'll be able to come off some of the medication.

Joy, that scan result is such good news 😍

The meeting with one friend where another also joined sounded lovely 🌞

My friend has come from abroad mainly to see me. I'm slightly annoyed with her because she didn't mention it until after she had booked fflights. Had she asked, I would have said wait a few weeks when hopefully I would be allowed to drive and maybe my white cells and energy levels would have increased a bit and so we would have more options.

As it is, I still can't drive (but can get taxis) and can't be indoors with multiple people. Plus can't walk very far. The weather forecast is poor so sitting outdoors won't be enjoyable so I'm a bit stuck to know what to do. She's staying in the next town so even meeting up involves her getting a bus or me getting a taxi.

youll just have to explain, as you have here.
if she’s a good friend she’ll understand.
Wishing you all the best in your continuing recovery

She does understand; it's mostly my own frustration that we can't really go anywhere or do anything.

Joy I just want to say how helpful I am finding you threads.

I am waiting the appointment for

• PET CT scan
• Guided ultrasound

Suspected lymphoma

It has been a struggle getting GP practice on board so I would take myself to a and e.
Because I have an auto immune condition I raised in September and continued to do so throughout October with GP that pain in spleen area was a real concern scans did show masses near spleen - first scan I did have (after basically camping out in a and e with suspected blood clot) as had high blood pressure...

So it has progressed I now have results from a CT scan from a few months ago that show real progression but again I suspect in part because my GP kept saying my pain was incidental and I was not specific enough I think everything was treated as merely routine..

i basically only got the last CT scan as I insisted I get back my gastro care due to a different pre existing immune condition so I could request that someone look at my past scans to show changes ..

I hope I don't have to wait too long for biopsy (if they can get to it ok) and PET scan.

I also am the only adult working, not at all wealthy and am wondering how I will manage treatment and looking after my kids - found out right before one child was due to start exams.. but I know they can not confirm the diagnosis until scan and biopsy .. it really does not do me any good but I want to say to the GP .. I did tell you so... I did say I was concerned masses on spleen were cancer the pain the breathing etc .. night sweats were menopause but I felt I went through menopause pretty well..

goodness I found it exhausting advocating for myself so eventually I did think well oerhaps it is all "incidental" while trying to rest in bed at weekend and then work all week in a long hours job.

I just hope it has not gone wild since the last scan was done some 4 months ago ..

also a bit annoyed the results have only come out now. Or came out back them but only relayed to me now.

Also I don't really want to rain on your parade either - but I really do appreciate your threads. For me they have been very illuminating.

I hope l can get treatment started as soon as they stage my cancer and take a biopsy.

i know they say suspected .. but I can't think what else it could be.

@Lemonview

I'm so sorry it has been such a struggle to get them to take this seriously. The first time I went to the GP I was told "It's just constipation, take laxatives" so I didn't go back for over a month and then I had to exaggerate the symptoms to get them to take action, but yours is absolutely awful.

Have they referred you on the 2ww pathway? They should have if it's suspected lymphoma. Who has said it's suspected lymphoma, your gastro team?

The waiting is the worst and your fears will be running away with you. Everyone says "don't google" and I know that's impossible, so all I will say is that new treatments are being introduced all the time so things like five and 10 year survival rates you might see are completely meaningless, because the modern treatments weren't available five and 10 years ago.

Feel free to continue posting here and DM me if you want.

Also, have you had tumour marker blood tests? I had CA125, CA19-9 and CEA, although iirc only the CA125 was particularly high.

Thank you so much for your messsge.

Yes must be on 2WW pathway now.

As have been given prospective dates and they are imminent - just waiting for confirmed dates if that makes sense.

I don't know how much I want to share online so yes will direct message you when I have a spare moment.

I think for some reason my referral was marked a routine type.

FWIW hospital have been very good generally obviously they needed to look at different things .. and they have been sending me for various other tests... but yes GP practice even sent me someone else's results .. not mine .. I did ofcourse go on about that and said please make sure you have not sent any info of mine elsewhere .. make sure you are up to date .. the practice also tried to blame hospital but it was for someone at an entirely different hospital with a different name so I could explain no it has come via the GP practice nowhere else ..

It is a bit complicated but yes GP not great and I know they are not resourced but ...

so I think the referral I want I got (eventually) but it was marked routine .. meanwhile the hospital is trying lots of different tests etc ..

I hope you are doing well.

Not sure about tumour markers as yet but wonder if they share that in person.

I will rest now. I am very grateful you responded.

I will send a DM .. still taking everything in.

With my friend from abroad, she went to York with another friend on Friday (I was at hospital.) We had lunch out on Saturday. I rested on Sunday while she saw another friend of hers. We visited a friend of mine yesterday and had a bit of a walk around the village. Hoping to go somewhere this afternoon then she goes home tomorrow so I will rest then.

It's good that I don't have any hospital appointments this week until Friday.

Positive notes in your life Joy.
Lemonview - sending you strength and a hug. xx to both of you.

Yesterday we went to the Hepworth. I thought it would be quite quiet on a Tuesday and it was. There was a school group just leaving as we arrived so we timed it just right. They have folding stools you can borrow so I could have a sit down in each gallery.

DH is out all day today so I'm having a pyjama day and resting up. I was exhausted when I got home yesterday.

Exhaustion is good after a satisfying day .... and so good to have something positive to rest after!

Oh the Hepworth is lovely. One of my favourite gallery cafes as well. If I got married again I would seriously think about doing it there, especially if we could hang out in the beautiful gardens. I’m glad you had a nice bit of culture- apparently the arts are now good for our health!

Haven't updated because not much is happening. I saw the trials consultant yesterday and asked if I can drive yet? It's eight weeks since the CAR-T and I was told no driving for two months. She said that as I haven't had any neurological side effects, it should be fine.

Now wondering if I have shot myself in the foot and I will be expected to drive myself to appointments instead of them booking a taxi for me? I don't even know if the car will start after two months sitting idle. At least a taxi is booked for tomorrow, for Aleta infusion four of six.

Fingers crossed for the taxi. Knowing how things can change so quickly from one week to another I figure we’ll always have a chance to let the nurses know things have changed for the worse (but that’s just for short term. Positivity always).

I think you need to plan a fairly long drive as its first run after that long on the drive. 30 miles or so, preferably on an A road or motorway, to give the car a chance to get the battery fully charged again.

On the hospital front, even if you are technically able to drive you may be able to argue that you can't drive that far? Because it's very different pootling 5 minutes to the supermarket on roads you can do on autopilot from navigating the nightmare that always seems to be the road systems near hospitals, plus parking etc etc.

OP I agree it's better to start driving to the local shops first, not long distances. Take it easy! Great news it's all good so far, I was wondering how you were feeling since your last post. No news is good news :)

Hey Joy, bit late to the good news about your scan but congratulations! I hope the Aleta infusion goes well, 2/3 of the way there. Don’t drive if you don’t want to, I’m sure they’ll happily accommodate you having a taxi.

I love to drive, it just offers such freedom, even on our godawful roads!