Are specks on the lymph nodes really bad news?

Hi everyone,

I went with my mum to her hospital appointment last week and she got her scan results back from the week before. She's on her third chemo today (half way through!). The scan showed an area that "could be scar tissue or could be some disease" - well we're having chemo so hopefully if it is disease we can fight it. But the Onc also said there was a speck on or in her lymph node or gland. At the time I was a bit knocked for six as we weren't really expecting that news (we were thinking it would be all clear. Or hoping rather) so didn't ask about this lymph node / gland, but since then I've been worried about it - if it's in or on the lymph node/gland does that mean it can easily travel around the body?? If so, can they just remove the gland/node? And if I were to contact mum's oncologist, would she talk to me about it as I don't want to let mum know I'm worrying as I tend to put a positive spin on everything I relate to her...

Advice most appreciated! xxx

9 Replies

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  • You could call MacMillan for advice, they are very helpful.

    LA xx

  • Hi ...You haven't mentioned whether your mum has had an operation or not...I had an operation followed by six sessions of chemo carb/taxol after having a scan at the end of chemo I was told that I had "nodes" which could be cause for concern but I had these nodes on the very first scan and every scan afterwards and even before the operation ( but wasn't told) when I enquired about this they told me they were keeping watch on them but wasn't sure what they would do (the nodes) anyway fast forward four years and I have not heard anything about these nodes...I have had a recurrence but nothing to do with the nodes.

    Your mum is only halfway through her chemo so whatever they see on the scan might disappear at the end I hope this puts your mind at rest you could ring up her specialist nurse and ask her advice on this or you could ring Ovacome helpline and speak to Ruth Payne she might clarify things tel 0845 371 0554 ....best wishes x G x

  • PS it would be best if you rung OvaCome today as tomorrow they will be busy at Potucullus House as some memers are going to talk to MPs xx

  • You could also call 'Ovacome' and speak to the nurse - but I'm sure that the oncologist's secretary will get the information for you if you ring to ask. Were you at the consultation? If so, I'm sure they'll be happy to discuss it with you - even if it's 'in general' rather than specifically about your mother's scan. It is important that patient confidentiality is respected, but where a relative has been present, there is always room for support for them too.

    Best wishes,

    Isadora

  • Hi thank you both for the response. Yes, mum had an operation which was a full hysterectomy and removal of some of her bowel as it had spread to this too. She is only having one chemo drug - I think (but am not sure) that it's the carbol and not the taxol as she was told this wouldn't help her... (what are your thoughts on this incidentally?!)

    I have thought about calling Macmillan, but to be honest, so far the input from the lady I spoke to from Macmillan was really negative so I'm a little scared to talk to them again! It was a few days after mum's surgery (and we didn't know it was cancer before the surgery so we were still reeling from the news). As the surgery was a 'success' and there was " no residual disease left in patient " (to the naked eye) I said to the MM Cancer specialist "so, her chances sound quite good then?" to which she replied "well 70% of patients with this don't survive more than 5 years". Then I fainted in the hospital corridor (embarrassing)! Luckily my parents didn't hear or see this and I haven't told them - it would crush them, and they're struggling with being positive as it is. From reading posts on this blog I"m a bit cross that she said that to me at that time, she could have at least put it a different way, perhaps she could have said that 30% DO survive if those really are the statistics. Besides, statistics are so general and each case in individual isn't it! But at the time I felt like the bottom had just fallen out of my world. I know they have to prepare you, but positive thinking is so important isn't it.

    So, I will try and contact the oncologist or Ruth Payne I think. You would think if her Onc was overly worried about the spec she might suggest adding the other chemo drug too? Oh I don't know. It's like a minefield of information isn't it!

    Anyway, mum hasn't had the chemo today after all as her white blood cells were too low. Apparently this is common and nothing to worry about... sigh.

    Still, on the positive side of this delay, she should be in the last week of her chemo cycle for Christmas Day rather than the second week, so can hopefully enjoy it a little more. Look on the bright side eh!

    Thank you again for your messages xxx

  • Dear Angela

    I'm really sorry you're having to go through this. It really is worse I think for our relatives than us. I've got Stage III Ovarian Cancer so it spread to the uterus, but there were also specks on the lymph nodes. I was told these were inoperable because they were widespread and deep in the abdomen. After chemotherapy I had exactly the same information as your mum - that they could be scar tissues or little specs. That was over a year ago. I also only had carbo-platin. It's a shame your mum doesn't join this site as she'd find herself in good company.

    I wouldn't have minded your Mum's prognosis at all. I was told between 5 and 15% of women with my grade and stage of cancer will survive 5 years. I'm now at 2 since diagnosis and feel absolutely fine. I had carbo-platin only by mistake - but if they don't recommend Taxol I wouldn't push for it. It has a lot of side-effects and takes ages to administer. Carbo-platin won't make your mum's hair fall out and it does 95% of the job in just an hour per infusion. Taxol takes 6 hours.

    Generally the chemotherapy administered is dependent upon ones general health and the ability of the kidneys to process that amount of the treatment. Given Carbo-platin does most of the job I'm sure she'll be fine on that alone.

    This is such a worrying time for you. I wish I could give you better statistics but I can't. All I can say is your mum is not a statistic, and nor am I so I'm not worrying about being the wrong side of the statistical line. I'm just concentrating on making the most of life while it's so good. Hopefully your mum and dad will this way too as your Mum's cancer is unlikely to be curable.

    I wish you lots of love and a hug.

    xxx Annie

  • That was really awful of the MM woman to say that! I can't believe the insensitivity sometimes. Anyway, the good news is that the statistics are so often wrong, we are all fighting our own corner when it comes to cancer. Lots of us are proving those damned lies and statistics wrong :-) the specs have been picked up quickly and should hopefully be treatable, with current chemo or maybe an adjustment. Anyway, you're doing a wonderful job, trying to keep your Mum's spirits up. Do so hope things are better than you're fearing. If not sure, give Ruth a ring on Friday, tomorrow's out cos of the Parliament visit.

    All the best to you and your Mum

    Love Wendy xx

  • I agree with everyone, it was unforgivable of the Mm woman to say what she did! When I saw the consultant he first time, he told me that a couple of years ago he would have said 30% chance of survival beyond 5 years, but now it's nearer 50%. The statistics are changing all the time, with new treatments etc. I had stage 3, and among other things had a lymph node removed as it was on that, but while I have now got a reoccurance, it has remained in he abdomin, and is thought to be from microscopic cels that couldn't be seen, and has not spread from the nodes.

    I hope this helps,

    Love

    Chris

  • Hi everyone. So I actually plucked up the courage (thanks to all you ladies :-)) and contacted her Oncologist's secretary who gave me the number for the specialist nurse (not sure actually what her title / role is actually). I had a really long talk with her, and she went through mum's file from start to finish with me. The lymph nodes could be a number of things so the Onc will keep an eye on them. If it turns out to be cancer then she might suggest a change in treatment, but we will have to wait and see. She did manage to get it across to me once and for all that this isn't a 'curable' disease as such, but she discussed it with me in a really good way and I feel so much better. She also said that mum's CA125 is down to 38 (it was 311 at the start) so I feel really good about that. After a good cry on my husband's shoulder and a nice walk in the rain with my dogs, I feel I'm starting to accept all this and can understand it a little more rationally.

    ChrisH - your 50% stat is far more palatable so I'll go with this from now on! Funny isn't it - I know statistics should be taken with a pinch of salt as ALL cases are individual and these statistics are taken from such a varied cross section, but somehow, it does help in your head to get an extra 20%!!!

    Thank you SO much to all of you - to be so kind with your messages when you are going through so much yourselves is just plain inspiring! Now, I MUST drag mum into this century and teach her how to use a computer so she can join in !!

    Once again, thank you thank you xxx

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