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Son aged 19 Diagnosed

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  • Son aged 19 Diagnosed

    My son aged 19 was diagnosed with TC in January. We live in the UK and have found the timescales between diagnosis and orchiectomy as frustratingly long.

    Key dates are as follows:

    13/1/2021 Feels lump on testicle
    14/1/2021 Doctors appointment
    26/1/2021 Ultrasound
    3/2/2021 Appointment with consultant - cancer confirmed and blood markers taken
    9/2/2021 CT scan
    16/2/2021 Bloods taken before sperm banking can proceed
    23/2/2021 First sperm banking
    26/2/2021 Second sperm banking
    1/3/2021 Begin 10 day isolation (Covid protocol)
    11/3/2021 Operation

    His Discharge Advice Letter stated the following:

    Right testicular tumour on USS - 2x2.5x2.8 right lower pole tumour
    3.8 cm para aortic lymph node, indeterminate small lung nodules

    BHCG 2
    LDH 281
    AFP 14

    I have found this forum excellent and it has provided me with a wealth of information but as all of this is still fairly new to me I would be grateful of any thoughts. I understand that we will need to wait to get the pathology results before we know the full picture but reading about the para aortic lymph node and lung nodules has really freaked me out!! Also, I’m worried that the blood tests and CT scan were done so long ago that they do not give a true reflection of his current situation.

    Thanks in advance
    Last edited by Welshlady; 03-16-21, 04:34 AM.

  • #2
    Hello there and sorry for your situation. You are right, two months period between first apointment and orchiectomy is really to much.

    Pathology report is essential for a big picture. Lung nodules can be lots of things, even nothing. But, unfortunately, 3.8 cm para aortic lymph node is too big to be something else than TC spreading. So you can expect chemo, or maybe radiation, for sure. Don't be scared, there is still over 99% chance that your son will live up to 120 years. It is time to be prepared because several rough months are ahead of him.
    45yo, left I/O 07/30/2018, T1 pure seminoma, surveillance...
    Waiting...

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    • #3
      Lung nodules are fairly common, I would not be too concerned, but as Harxxony said, he will need further treatment, I would expect chemo.
      Jan, 1975: Right I/O, followed by RPLND
      Dec, 2009: Left I/O, followed by 3xBEP

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      • #4
        Not sure where you are in the UK but perhaps reaching out to the team at Barts in London may help. The 3.8 cm node is of significant size but a little bit of a more rare place for a right-sided testicular cancer to metastasize to in isolation. Certainly not impossible but more rare of a spot as typically the caval nodes are more common. Just throwing it out there as as mentioned I think it would be unlikely to be something other than TC but at least it is something that you can ask about. Regardless, I have full faith that chemotherapy in the short-term will melt that and any lung lesions incredibly well.

        Mike
        Oct. 2005 felt lump but waited over 7 months.
        06.15.06 "You have Cancer"
        06.26.06 Left I/O
        06.29.06 Personal Cancer Diagnosis Date: Got my own pathology report from medical records.
        06.30.06 It's Official - Stage I Seminoma
        Surveillance...
        Founded the Testicular Cancer Society
        6.29.13 Summited Mt. Kilimanjaro for 7th Cancerversary

        For some reason I do not get notices of private messages on here so please feel free to email me directly at mike@tc-cancer.com if you would like to chat privately so as to avoid any delays.

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        • #5
          Hi Welshlady, sorry to hear about your Son and hope he is recovering well. I was just 3 weeks started ahead of him in London but was fortunate to be dealt with in just over a month.

          I can vouch so far for Barts - I had a consultation there last week where the possible steps were explained to me in great detail.My case is of course different (1st post-op test all clear thank God) but they were very thorough in explaining the options if anything returned (If you are in Wales, though, this will be a different NHS Authority)

          You might also look at Macmillan - they have a very comprehensive book on the subject.

          Hope everything goes well for you both!

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          • #6
            I thought it was time I updated my thread regarding my 19 year old son - I know I found it incredibly helpful reading other members stories when he was going through treatment.

            My son began 3 x BEP mid April and finished in June for non-seminoma stage IIB. He coped well with the treatment. It was heartbreaking dropping him off at the Cancer Centre and not being able to accompany him because of Covid restrictions but he took it all in his stride and never once complained - I am so proud of him and how well he has handled everything especially to have all this thrown at him at such a young age.

            He had his first post chemo CT scan on 5th July and his one enlarged lymph node had reduce to 1cm - a massive decrease from the 3.8cm before his orchiectomy.

            He had another CT scan 21st September and we received the news this week that the node has now reduced to 0.7 cm. His blood work is all within normal range.

            Unfortunately we were never told the full results of the initial biopsy - just that his tumour was predominantly embryonal carcinoma. I still worry that there was teratoma present and have dreaded the thought of him needing a RPLND as it is not an operation that it carried out often here in the UK. Unfortunately all of my son’s post treatment appointments have been over the telephone so myself and my husband have never been able to speak directly to the consultant to ask any questions.

            Am I right to feel that after two CT scans we can start to cautiously breath again? I know that it is still very early days but I cannot bear the thought of him needing further treatment and my one wish is that he can put all of this behind him and start living his life again. I do really worry about the long term effects of BEP and if his life expectancy will be cut short as he has had chemotherapy at such a young age. I also worry about my other son who has just turned 18 - what is the likelihood of him developing testicular cancer? I know I shouldn’t worry about things that are out of my control but I’m a mother and that’s my job!!

            My thoughts are with everyone also on this journey xx

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