Lymph nodes recurrence

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Hi All

Firstly I just want to say thank you to everyone who contributes here. I haven't actively posted in a long time however I do watch from afar at times and you have all given me and so many others I'm sure so much comfort and advice while passing through treatment. I just felt being a new mum at the time I wanted to switch off for bit while rebuilding my life and getting better.

In my case the tumour was found July 2022 and they confirmed to me the day after giving birth to my son. They found the obstruction during labour which resulted in an emergency section. I presented symptoms while pregnant and was fobbed off/ misdiagnosed like many of us. It was a ssc anal tumour with some groin lymph node involvement. Was so shocked but focused on getting treatment and my new born baby. 
I started chemo/radio 6 weeks later and thankfully then declared NED in February of this year. 

I've just had my annual scan , everything is great and clear at original site /lymp on the mri however I have a couple of localised lymph nodes that seem very slightly enlarged . I'm now waiting on a pet scan and just praying this is nothing. These lymph's are slightly higher up so they weren't in the original field but still classed as localised. My consultant has said if they are cancer they would then look at potentially removing these only however being close to blood vessels it could comes with risks. 
I just wondered has anyone had something similar? She said she has seen cases of this before? 
I know this is the worst waiting game time atm.
I'm really trying to stay positive, I've been looking forward to finally a cancer free Christmas so much with my little boy and fiancé having only just recently feeling we had some form of normality back , we recently got engaged and after last year being so poorly  I'm finally feeling the best health I have in years . 
So I guess just reaching out to you again for a little comfort , hopefully positive experiences of similar until I get these results.  Thank you X 


  • Hi Lp7, I'm reeling at your having this miserable cancer discovered during the delivery of your baby, and now this. You are too young and too busy to have to cope with this!

    I don't have any personal experience to share, but wanted to post anyway and say that I'm pulling madly for you, prayers and mojo and perfect health beams and anything else I can muster up for you. 

    And I think the chances are good that it ISN'T cancer. I'm super glad they're taking it seriously and following it up (despite the awful Christmas timing) but lymph nodes do tend to wax and wane sometimes, just in the course of doing their job.

    Enjoy the Good Health Feeling and have a really beautiful Christmas.

    Hugs

    Suz

  • Lp7

    I completely get why you are so worried and I am so sorry that you are having to go through this after getting the all-clear.  After my treatment finished, the young oncologist said my lymph nodes were 'quite large' which got me in a real tizz, but it was nothing, the next time I saw her she said everything is fine.  I am hoping very much that this is the same for you.

    I very much hope that the scan shows nothing and I'm sending you a big hug.

    Irene xx

  • Hi  ,

    I’m really sorry you’ve this uncertainty hanging over you right now. This treatment can leave us with a whole load of inflammation that seems to have the ability to flare at any given time especially in the pelvic area, I’ve everything crossed that this is just the case for you too. 

    Going back to your diagnosis, I’ve been listening to the news today about cancers that are missed & symptoms that are pushed aside by the medical profession because they arise during pregnancy! This needs to change now! 

    Take it as a positive that you’re feeling in great health right now. Please keep us updated when you receive your results. Sending lots of positive thoughts your way & know we’re here to support you however we can. 

    Nicola 

  • Hi Ladies , thank you all so much for your kind comments. Staying positive and trying to not let this interfere with my Xmas spirit.
    It's my last day at work tomorrow for a few weeks  so have been looking forward to some quality time at home with my little family. 
    I completely agree with you  re misdiagnosis and pregnancy . Since this happening to me I've heard so many cases. To be honest I do want to take matters further as I've been advised this has been complete negligence on their part as a simple examination would have found the cancer.

    And if me doing so even helps one person it'll be worth it. There were numerous opportunities I presented this to my gp. 

    There is one time that particularly stays in my mind when  I called in tears with the pain  to the doctor only to be advised that there was no need for him to see me and theyd just leave me a prescription for a cream/pesssry at reception . He said  Its very common in pregnancy to have pain in the back passage , it will most likely get worse and he would see me after I'd had the baby. 

    Of course I'd still have had the cancer but it could have been caught at earlier stage? No traumatic 50 hour labour ? I'd have the opportunity to potentially freeze my eggs instead of cracking on with treatment leaving me infertile  because we "don't have much time". 
    And of course the PTSD this experience leaves you with. 

    My son saved my life in the words of the first consultant I met and I'm eternally grateful for this , i just need hope and pray this awful disease isn't back . The thought of having to go through any more treatment is so scary. 
    Sending love and hope to everyone on here .. xx 

  • This post makes me tearful and I do hope you take it further - you would have the support of so many people here who have been fobbed off.  You are so brave.

    Love and hope to you too

    Irene xx

  • This is just awful. This is even more egregious than the legion who kept dismissing my symptoms.

    I think your best bet is to focus everything on healing for now, but this is an issue that it'll probably take folks like us, who've been through it, to push for correction.

    Starting with the doctor who diagnosed you without even looking is probably an excellent place to start.

    Steaming Suz

  •    I was traveling in the car yesterday lunchtime & had radio 2 on (Jeremy Vine) & he had several women on including the lady that’s been in the news for a couple of days that’s been diagnosed with terminal breast cancer following the birth of her baby, she had presented a few times to her Dr during pregnancy with a lump only to be brushed aside saying women's breasts change during pregnancy & it was nothing to worry about, by the time she was referred following the birth of her baby she had mets to her lung’s & other organs, I literally cried during that interview! She has 4 children ranging between 17 & a few months old. Two other ladies that called in had presented with back pain & vaginal bleeding/ discharge etc., during their pregnancies only to be told this is common in pregnancy & both were diagnosed with cervical cancer following the birth of their babies, like you one of the ladies had complications during the birth & explained that because of the cancer her cervix wouldn’t open so she had to have a section & this is how she was diagnosed. I find it shocking in this day & age that this is happening, I completely agree that you certainly have grounds for going down the negligence route & as you say if it makes a difference to one other person then it’ll be worth it. I had a conversation with my oncologist once, he knew I volunteered here, I mentioned about how many people here were misdiagnosed when visiting their GP’s & therefore ended up with a later staging than necessary & how do we begin changing that, his reply was lengthy but he said that with symptoms such as bleeding, lumps or bumps etc., nobody should be leaving their GP’s surgery without a thorough internal examination as in the case of anal cancer this is how things are missed. I had a conversation with a GP I saw at our rather large practice a few months ago (you very rarely see the same person twice!) & he said that the advice at that time was to allocate people 5-8 minute appointments, he said that it was impossible for him to diagnose what’s wrong with a patient in that timeframe & refused to stick to it! I wish more GP’s had his mindset! 

    Try & keep that positive attitude, enjoy your time off with your family & have a great Christmas. 

    Nicola 

  • Hi Everyone 

    I hope you managed to have a lovely time with your family's over Christmas and I do wish you all a healthy and happy new year. 

    I just wanted to update that unfortunately I've had my pet scan results back and it is a recurrence I'm experiencing after all  . Pensive
    Devastated is a understatement., 
    Tbh I didn't want to look at the scan picture , I was  completely in shock to hear these words again but I believe it's in 4 lymph nodes slightly higher up ( I think pelvic but she is still classing it as localised). 
    I will clarify on next visit , I just had to get out the room as quick as I could as I felt I was going to be sick with the news of it all. 

    I've to meet with my surgeon next week to discuss what they will do. 
    My oncologist is saying this will still be a curative approach which im holding on to however it's a high risk operation as the nodes are close to blood vessel and they will have to take even more away as precaution. She hasn't confirmed if I'll need APR surgery yet as there isn't any activity in the anal canal so I'm unsure until I meet surgeon. 

    Im just so scared but trying to stay positive , I hope this is just a blip and I'll recover fully but i am also very frightened of meeting the surgeon next week and what she will say.

    My little boy is only 16 months , so  the thought of not being able to look after him myself again having to through surgery  is really getting me down.
    I'd be keen to hear from anyone else who's had surgery / similar and is on the mend now . 

    Need to stay hopeful 
    Thank you Xx

  • Hi  ,

    I'm so sorry to learn of your recurrence I can only imagine how devastated you are. You have such a young family & must feel robbed of the time you should be spending doing just the normal things instead of dealing with the trauma surrounding this awful disease! 

    I know it must be almost impossible for you to think this way at the moment but it’s a positive that your oncologist has said the approach will still be curative. 

    The waiting around for appointments is so difficult also, painful in itself, you just want it over & done with don’t you? 

    I hope the meeting with your surgeon goes well & you have some clarity around your next steps. I’ll be thinking of you. 

    Nicola 

  • Lp7, I'm holding you close in my heart. 

    Hugs

    Suz