Oligodendroglioma grade II diagnosis...scared?!

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Hi there, does anyone else have this diagnosis!?

I cant be the only one, I’m only 40 and have read through some frightening statistics. I have been given the option for 50-70% removal with the associated risks..

i am scared of more surgery, but also scared that saying no is the wrong decision.

I just want to hear other people’s stories really and know I’m not alone in this (even though my family and friends are great, they don’t understand)

thank you

Lyd

FormerMember over 3 years ago

Hi Lyd, my husband (59) had the same diagnosis 16 months ago. He had an urgent op (it was the size of more than half of the frontal lobe) & they managed to reduce it by 60% (they were aiming for 90% but arteries in the way) & he had a stroke during the op. It was all looking pretty bad (he had 9 days in the hosp as it was peak covid lockdown). But the stroke outreach team visited 3x per week and we paid for a speech therapist and he made a good recovery. Stroke is unusual, he was unlucky. He has been left with some right side weakness but was determined. He is able to play sport again & do most other stuff. He gets fatigued & this is a limitation some days. In terms of long term effects I guess it depends where your tumour is? The frontal lobe damage means his memory, emotional expression & ability to foresee and plan are impaired. He was retired so work was not an issue, but we do have older teens at home and family life can be a challenge. We are adapting all the time. Humans are amazingly resilient & the person with the tumour and those around them adapt, review, adapt again. Chemo started 2 months ago (radiotherapy not possible), hoping to shrink tumour. I hope you are able to take time and shrink it before they operate, my only regret is that with the size of it (there was a brain bleed) & the pandemic, operating was hasty & I wonder if we should have panicked less & taken more time to get a 2nd opinion? 10yrs plus of life possible. Learning to make it a good one is the trick.

Lyddy81 over 3 years ago in reply to FormerMember

Hi there,

Thsnk you so much for your reply, it has been really helpful to me. Mine too is in the frontal lobe and quite extensive they tell me.

Im going again today to speak to a different consultant about the risks of surgery vs the benefits..

They did talk about stroke and also paralysis as possible side effects. I do have the option to have radiotherapy first which I’m going to go for I think. But it’s such a massive decision I almost wish it was out of my hands.

I find simple decision making difficult and always have,

My family are great and most of them supported my initial decision to leave surgery for now. My sister is very proactive and is trying to help, but sometimes I feel torn about my feelings. She has given me a list of questions to help me today, I know it comes from a place of love. But a small part of me wants to tell her to leave it.

Isn't cancer awful!

Has your husband tried changing his lifestyle in any way to help him? I’m trying to start following the budwig diet, it’s all anti cancer foods and using the correct portion of good fats. I’m also taking lots of vitamins in a hope to get my immune system in top shape!

10 years is not enough for me, I’m 40 and my son is only 7. I need more hope!

Thank you again

Lydia

FormerMember over 3 years ago in reply to Lyddy81

Dear Lydia, Of course it is an individual decision in each case & no one is the same. Husband’s diet is pretty good, he is not overweight and has always been pretty sporty (he still plays golf, badminton & table tennis). He tends towards faddiness (& skinniness -I wish I could say the same) with his eating, jumping onto whatever nutritional bandwagon that’s in town. If changing your diet makes you feel better, then do it - as long as it’s a balanced eating regime it can’t do any harm. And it will put you in the best shape if you ever have chemo.

Your sis maybe feeling better by doing all she can to help,but if it doesn’t help you, just say so. You are allowed to put yourself 1st in this situation.

I think you are doing the right thing in getting a 2nd opinion &doing everything you can to shrink the tumour prior to being operated on, if this is essential. I had radiotherapy for a breast tumour & it wasn't too bad at all.

How have they arrived at the grade? With my husband they said it was a grade 4 from the appearance on scan. He needed a biopsy & lab analysis. Husb figured that if he was going to have his head cut, & analysis services were also disrupted, he might as well have the op anyway. Aafter analysis it was a grade 2. However, with it being so large & with a brain bleed it still felt right to operate, on balance. Covid panicked us too, if Iamhonest- it was hard to even get into a hospital at the time, let alone find someone allowed to do something other than deal with covid. He was saved by the private MRI scan. I am glad your diagnosis is later and you can take some time, though I also know the unwelcome feeling of being consumed by the topic…

Unless they are saying you must have the op Maybe consider delay (unless your symptoms are unbearable or damage is being done by tumour growth).

My husband seemed depressed in the 2 yrs running up to the diagnosis. It was only when he had headaches combined with falling over that we realised something more serious was going on.

I am sorry that I misled you about life expectancy, 10yrs is the minimum my husband has left, he tends towards pessimism, so we say 10 yrs to stop him thinking 5, he can barely believe this is true.

Its hard to think about how long the tumour has been quietly growing, without major effect.
I understand that at 40 there are more issues- I hope you have support at home with your child & money will not be a worry. This diagnosis makes you hone in on the things that are important; no one ever had ‘she was great at her job’ written on their headstone. There is money advice available out there.

We have successfully applied for personal independence payment & both have pensions (I was made redundant a week before his diagnosis). Also, getting power of attorney, etc sorted out is useful. The considerations & feelings about children is the hardest, I find.

All I can say is that their brains are more flexible & he is sure to adjust; your son may well find some consolation in the extra attention & over time adjust to a less intense relationship with mum. At 7 what they can grasp is mercifully limited & let me reassure you that the scarring diminishes & becomes not outwardly noticeable to most people.
Our eldest to off to college in a month & my youngest starting A levels. They get pushed more quickly to mature, but this puts them ahead, as it’s something they will all have to do in time.

If your tumour is slow growing they maybe able to shrink & not operate. A tumour growing changes you subtly, an op is potentially a more sudden/noticeable change in personality (in our experience). We work on focussing on what we have (75% works fine), rather than the bit that doesn’t work so well.

Have you looked at NICE guidance on what the treatment options are? Take someone with you to take notes/ask questions, it’s very hard to concentrate when emotions are involved. Take time to go away and think about it. (I am sounding like your sis, sorry).

My husband’s chemo is now underway it goes on for the best part of a year) & then 6 months to recuperate. He didn’t have to have it now, but wanted to feel better mentally by doing everything he can. It was hard to bear his decision as his ability to foresee is compromised following the op & I knew how bad chemo can be. And we needed more time to get over the diagnosis/op/rehab stages. (Thank heaven for the rehab outreach staff).
Finding a peer support group to attend to get strength (& ideas) from others going through the same (our local Headway group is great) has helped. I am still trying to find a carer group, it can feel so isolating.

Sending you positive vibes; you will get through this. Kind regards

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