Hi, where do I begin, well wishing I wasn't asking about this!
So my 52 year old fit hubby just been diagnosed with unknown primary with secondary groin lymphnode cancer. It's been the most bizarre 6 months, so we came back from a wonderful Baltic cruise hubby having been bitten right lower leg. This turned into cellulitis and he was admitted. Whilst in hospital hubby mentioned a grape sized lump in his groin, he'd never noticed this before...he was advised due to the bad bite and cellulitis this was 'Normal' it's the body fighting infection. So the next 6 weeks the lump grows, he goes to his GP assured it's not sinister and to be on the safe side sent for ultrasound scan. Finally 6 weeks later he gets the scan by this time his groin area very swollen. Ultrasound scan decided the swelling was an abscess so urgent surgical drainage. The drainage wound was left open, the fluid that was removed was sent for biopsy, apparently when the fluid was being removed some lymph node tissue unusually we were told came out with the fluid. Devastatingly the results came back 4 weeks later... not sure why they took 4 weeks...is this normal? Anyway, squamous cell carcinoma found.
We've been messed about since 16/11/17 when we were given the results, no cancer support at all, no one allocated for advice, firstly told it was a primary cancer then a week later advised it's an unknown primary with secondary in the groin lymph node.
So just wondered if anyone has had the same sort of diagnosis, what you've gone through, how you are etc etc
So for the last 3 weeks it's been awful with no input just waiting for scans and results. He has now been referred to a nearby cancer centre, been advised should be seen 2/3 weeks...all we seem to be doing is waiting patiently!!!
He's been advised they are not sure if it can be removed due to the groin area anatomy, veins, vascular system etc or it will be radiotherapy.
He really well, really strong and positive.
So any advice/experiences good or bad we'd like to hear
I'm so sorry to hear about your husband's situation and that you find yourself here without having had adequate professional advice or support. It really shouldn't happen this way, but unfortunately given our very stretched NHS it seems that it often does.
I'm sure that the online community here and the Macmillan helpline (if you phone) will try to support you as much as possible.
Although I don't know much about squamous cell carcinoma I went through the experience of my mother having a cancer of unknown primary, with all the frustrations and delays that that entailed. During the process I came across the NICE guidelines, which I found helpful in identifying problems we were experiencing and by giving pointers to the service we should expect, such as having a CUP specialist nurse or key worker.
If nothing else, these guidelines may help you to articulate to appropriate people what you want, such as a management plan.
I'm glad to hear that your husband seems to be well and positive. Do take good care of yourself too, keep reaching out for support, and I wish you both well.
Hello buddy rescue, you were looking for someone who had been through the same sort of diagnosis, what they went through etc.
I’m similar but not the same.
In July 2015 I had been feeling unwell for a few months and the last symptom was a lump com8ng up the size of a golf ball in my groin area. My dr immediately referred me to A&E as a suspected hernia, and A&E admitted me to hospital and did a ct scan discovering extensive lymph nodes affected. A fine needle biopsy was then done that week into a lymph node into my back as they suspected lymphoma, I was also diagnosed with type 2 diabetes as my sugar levels were so high. A 2 week wait and biopsy results came up as malignant melanoma cells, not lymphoma. I was sent within 24 hours to a dermatologist to try and find a primary site for the melanoma on my skin, no site was found. As no site was found I was initially treated as cancer of unknown primary, I wondered if this was because they weren’t entirely sure, they were waiting for some further tests on the sample that take time to come through.
They were checking if I had a BRAF mutation as that meant I could have a targeted therapy drug called dabrafenib. This tablet twice a day for 9 months helped shrink the cancer for 9 months and then a routine scan showed my cancer had spread to my ovary. I was then put on immunotherapy drug Pembrolizumab for a year. My scans are clear and I have had no treatment since April, I’m very well.
So based on my experience you husband’s Cancer might not be unknown anymore but is metastatic squamous cell carcinoma. Although it is true that like me the primary site of his SCC is unknown possibly because it has now gone, having been attacked by your hubbies immune system. The treatment may different to melanoma I did look at this Skin cancer booklet where it explains the cancer and treatments, I hope it gives you a talking point with your hubbys consultant, I’d be interested to know how he gets on.
It’s very unsettling to be told they don’t know where the cancer started but a bit academic if they know of a treatment that works. For me I had no surgery it was too extensive they said but the targeted therapy started to work quite quickly but the time before treatment started went very very slowly.
I hope this info is similar enough for you to feel so not alone in your waiting period. If I can help in any other way just reply to this post.
I was wondering if the Skin cancer group and the Carers only group might be of help to you. The helpline may also be a good place to talk through what’s happening, it’s open Monday to Friday 9am to 8pm 0808 808 0000.
Take care KT
Many thanks for your reply and lovely to hear you're doing well!
We saw the consultant yesterday and I actually feel as if someone is now 'in control' she's organising a PET scan Roth in there next week. She feels the mass can't fully be removed but perhaps de-bulked then some radiotherapy. She said it's very very early days and there's lots to consider...so all in all yesterday was positive...hubby very upbeat
Will keep you updated
Kind regards x
Many thanks for your positive thoughts xx
Hi. I’m conscious that your story is a few years old but my story is very similar. Groin lump, CUP, cancer in the lymph’s, poor response from medical teams etc
im inter to see what you have learned since and where you are now. Are you still about?
Hello PAJ, the original poster of this thread buddyrescue has had their name changed to formermember by Macmillans community team. I have read this happens when the member hasn’t used the site for over 3 years. I’m thinking they won’t get any notifications of your post. I am very much here though if thats of any help. If you click on my picture or user name it takes you to more info about my cancer experience. I hope your medical team are able to suggest something for you.
Take care KT