SCC grade 3 high risk+LVSI

Hi all, After I was diagnosed in Feb 2024 with CC, my histopatologic result after histerectomy was SCC grade 3, LVSI present, and this is my big concern.

I don’t know if someone had the same results and how was, are good hopes ?

Mention my stade is 1B2, witout lymph nodes involved.

Any experience can help.

Thanks a lot :hugs:

Hi

My diagnosis (2017) was fairly similar to yours: stage 1B2 (old Figo 1B1) SCC, 3.8cm tumour, lymph nodes clear, stage 2 or 3 (depending which report was correct!). Post RH histology showed LVSI + PNI (perineural invasion) + a close margin and I was restaged to 2A1. I then had further treatment with chemo-radio, Still here to tell the story.

Sounds like your cancer is not quite as advanced as mine was. Does your histology show clear margins? I think I was advised to have chemo-radio because of my close margin.

x

Thank you so much that you answer to me, help me a lot. I am at hospital waiting the doctor to tell me the result after tumor board, what treatment I need to do after surgery.

In my case the tumor had 4 cm, after surgery before surgery the measure was 2.8 cm, according CT scan with contrast, and ecografy 3 cm.

After surgery according with histopatologic, all margins was clear, the only bad think was LVSI and G3 SCC. Also in my case because was G3 they did IHC to check all the markers of the tumor. Thev showed the kI-67 really high that confirmed that was an agressive type of tumor and the grade is G3. My limph node clear.

I am so happy that you are ok​:blush::hugs: you had the same type of SCC, grade 3?
Thank you

Sorry I didn’t mention my stage after radical histerctomy is 1B2 (TNM), 1B3 (new Figo).

Also I received the treatment after tumor board will be radio. I don’t know yet how many sessions and if involve also chimio ciplastin and brahy. On 02.05 I will have the meeting with the radiotherapist doctor and will tell me.

Thank you @Jazza your message give me a lot of hope :hugs:

Hi Any

I’m not 100% sure what grade my cc was. Some of my reports said grade 2 and some said grade 3! I pointed out the discrepancy to one of my consultants and they said it was grade 2, but I didn’t get that in writing. I decided to drop the matter as I reckoned having further treatment with chemo-radio should deal with everything.

My chemo-radio was 25 sessions external radio, 6 sessions cisplatin and 2 sessions brachy.

Thank you @Jazza , one more question when you have time maybe you can answer. I am scare after radio+surgery to appear lymphdema….I don’t know what I can do to prevent this: more sport, to drink more water, to use leggings special for this, to do massages but I don’t if masaage is ok to do on this period.
Also after surgery when you start the treatment radio+chimio? I have 6 weeks in this moment after surgery, hope to start in maximum 1-2 weeks.

Thank you🤗

Hi Any

I started chemo-therapy 6-7 weeks after my hysterectomy.

I understand the fear about lymphoedema as I was also very worried from the start, and unfortunately I did develop it soon after my treatment finished in May 2017. You may have already seen that I’ve posted a number of comments about lymphoedema on this forum? If not, search on ‘lymphoedema’ and you should find them (I joined the forum in June 2019) - I’ve tried to include all the things I wished I’d known back then.

I’m not sure about massage during chemo-radio - personally I didn’t do it, or get it done, during that time. I did ask my oncologist at the time, and she said it might change my body shape/size which would affect how accurately I could be lined up for radiotherapy treatment. I find massage makes little difference to my body shape and is nothing compared to the amount of weight I lost during treatment. I don’t think my oncologist had a good understanding or interest in lymphoedema; I suggest it would be best to seek advice from your medical team about massage during chemo-radio.

I’m not sure it’s possible to prevent lymphoedema if it’s going to happen (most cc patients won’t get it - it seems it may partly be a genetic thing) but the following measures might help:

  • Daily moderate exercise, vigourous exercise can make lymphoedema worse.
  • Keeping well hydrated.
  • Having a healthy body weight, but wait until after treatment before doing anything about this - if needed.
  • Skin care (daily moisturising of legs with a bland cream) plus avoiding cuts and bites to reduce the risk for cellulitis which even asymptomatic lymphoedema can increase the risk for.
  • Elevate legs and avoid standing still, where possible.
  • Snug legging/stockings might help, but see my comments below about compression needing to fit well. If choosing your own, best to get those which have a sizing guide e.g. https://www.daylong.co.uk
  • Healthy diet

The trouble with the above measures is they can be pretty onerous to do on a regular basis, so you might just want to select those which fit into your life. I do them every day, and more, because it’s the lesser of evils for me; my lymphoedematous swelling gets uncomfortable and visibly worse if I don’t.

If you do suspect you are developing lymphoedema it’s important to get treatment asap. ideally by referral to a lymphoedema clinic. Generally, the most effective way of controlling swelling is by wearing compression stockings/tights which fit well, and provide the correct gradient of compression i.e. highest distally (ankles, maybe feet) and lowest proximally (top of the thigh). Compression shorts may also be required to help with swelling in the lower abdomen/hip/buttock. Ideally, it you do develop lymphoedema, compression garments should be measured and prescribed by a suitably trained health professional; badly fitting compression can do more harm than good.

As far as I know the only way, albeit not guaranteed, of preventing lymphoedema is by having LVA surgery (if appropriate) before you get any symptoms or not long after the first symptoms. LVA surgery is expensive and rarely available on the NHS. If you want to know more about this I suggest taking a look at the Oxford Lymphoedema Practice (OLP) website: https://olp.surgery/

The type of services offered by LymphVision may also be helpful in slowing the progression of lymphoedema in the early stages: https://www.lymphvision.com/

Both the OLP and LymphVision perform ICG lymphography scans which can detect poor lymphatic function before symptoms of lymphoedema appear. The information from the scans can be used to help get an optimal long term outcome.

The following two organisations offer reliable information and support for lymphoedema;
www.lymphoedema.org
ww.lymphoedemaunited.com

x

Hi @Jazza , thank you so much for all information and also for the advices that are really good, I will try to follow. Regarding massages after I read what you wrote is true, maybe is not good to do it in the same time with the treatment. I will ask my doctor.
But you wrote that you have lost a lot of weight…was because you didn’t feel to eat…
In my mind is that I will losse 5-6kg maximum and I feel tired and I will have diarrhea or constipation…and maybe UTI problems that hope don’t be so bad. But I think that I am to optimistic …
Thank you :hugs::hugs::hugs: I hope to start the treatment soon because in this moment I have 7 weeks after surgery.

Hi Any

I really struggled with appetite, especially during the second half of the chemo-radio. Also I had a lot of diarrhoea - felt like I was losing more than I’d put in lol. Eventually the dietitan prescribed me with me high calore nutritional drinks which helped.

I wish you all the best with your forthcoming treatment; you should be well supported throughout - my medical team made me feel like a VIP. We’re all different in how we react to treatment; some ladies sail through and others struggle to a greater or lesser degree. It’s doable :slightly_smiling_face:

x

P.S. If you do decide to buy your own leggings (tights might be better imo) from somewhere like Daylong be sure to read the ‘guides and help’ section e.g. it’s important to know about contraindications for compression:
https://www.daylong.co.uk/info/compression-guides/contraindications/

Thank you @Jazza, help me a lot all the information, I have also a liitle baby, 2 years old and I tried to be prepare but never will not know exactly till will not be there. I will write you when I will start the treatment.
Thank you :hugs::hugs::hugs::hugs:

I forget to ask about the skin problems if you had on the period of treatment, I understood that appeared in the area where radio is made…In the same I think and I hope that the team will recommend me a cream…maybe. Thanks :hugs::hugs::hugs::hugs:

I moisturised my skin every day with Aveeno lotion, as advised, and didn’t have any skin problems during treatment. Your medical team should discuss skin care with you, but it’s worth writing down any questions so you are prepared during appointments. My team were pretty good, but one or two things got forgotten so it’s best to have a checklist to hand.
x

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Thank you a lot :hugs::hugs::hugs:

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Hi Jazza, I had today the CT for the plan, after that they did 3 points with a marker, and with a tatoo. The points are 1 in front and the other 2 on the right and in the left part of the body. Where you had the points ? is scarry me the 2 other points…thank you🤗 I so worry, hope not be …something. They didn’t tell me nothing, only to wait and they will call me to start the radio when the plan is finished.

Hi Any

I also had 3 tattoo points, 1 in front, 1 on the right and 1 on the left - I think that’s what everyone gets. The points are used to line your body up at the start of each radiotherapy session so ensure accurate targeting of the radiation which means a better chance of a cure and less damage to surrounding tissue. I certainly remember having the tattoos done, yet another thing to take on board - it felt so daunting at the the time and brought on another wave of emotions.

Be kind to yourself and look after your general health as best you can, as this will help you cope with the treatment better.

x

Thanks Jazza, your advices and your answers are so good, help so much. I was worry when I saw the points from the left and write, I imaged that all points will be in front. You know I but the body cream that you recommended and is the best. I had a problem at the left elbow, really dry skin, I used 2 times the cream and is perfect my skin now. :hugs::hugs::pray:

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In case you haven’t seen the posts today, Jo’s trust and the forum is closing immediately (23 May 2024).

I’m posting on other threads, so that as many forum users as possible are notified before the forum is taken down. That could be in the next few days.

Check out the posts about the closure and pass this terrible news on in case anyone can help.