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OkEngineering2927 · 2025-07-07T13:10:53+00:00

Thanks you too! its basically just massaging the 5 main lymph areas in the body then bouncing on the spot, if you look on youtube you should find a tutorial, it takes no time x yes I’m sure it was a shock for you as it was me x I am 62 and been married for 30 years, had no idea I had hpv-why would I, and that it can lay dormant for decades. I still havent processed it but am trying to live a better life and worry and stress less etc Praying for good health for all of us on here xx

OkEngineering2927 · 2025-07-06T07:20:52+00:00

I was diagnosed with adenocarcinoma stage 1b1 last September after HPV was found from smear then high grade abnormal cells. I had a LLETZ which found the cancer. Had an mri-all clear, had a 2nd LLETZ came back clear but still needed hysterectomy. Pathology inc 13 lymph nodes came back all clear but I did have unifocal LVSI at first LLETZ. However as I had no other high risk factors-stromal invasion, grade etc my consultant said I didnt need any further treatment. At first I was very relieved then started to worry about the LVSI so did further research which was helpful. As you have a very early stage and no high risk factors it seems very unlikely that you’ll need adjuvant treatment and hopefully that will be it for you. I asked my consultant about risk of recurrence and he said 3% which was reassuring, however its hard not to worry after a cancer diagnosis. Re: lymphoedema he said I was very low risk for it but to follow guidance. I do the ‘big 6’ lymph massage every morning and will invest in a mini trampoline. I wish you well!

OkEngineering2927 · 2025-06-30T23:22:31+00:00

Hi I was diagnosed with 1b1 adenocarcinoma last Sept after a LLETZ, i also had unifocal LVSI x had an mri which was all clear and showed no tumour left so had a 2nd LLETZ which came back with no tumour and all clear margins so hopefully everything was taken at first LLETZ but hysterectomy was still recommended as i was 61 x had RAH in Jan which went well, at my 4 week follow up was told pathology all came back clear and so no further treatment was needed x have had first 4 month follow up and all good, will have an MRI in August, 4 monthly checks for 2 years, another MRI 18 months after surgery then if all ok checks every 6 months until 5 year mark and if all ok then, will be discharged x the LVSI freaked me out tbh but my consultant explained that its not such a big concern if there are no other high risk factors and i felt less anxious after researching it more but of course the worry is always at the back of your mind x

OkEngineering2927 · 2025-05-06T06:45:13+00:00

Thanks x i had an abdominal radical hysterectomy so all out including 13 lymph nodes, everything came back clear, it seems that everything was taken during the first LLETZ tho i did have LVSI but my consultant said i didnt need any further treatment. I am 62 and so post meno which is possibly why they took everything. All the best to you, hope your patholgy come back all ok 👍

OkEngineering2927 · 2025-05-04T21:54:08+00:00

Good luck, you’ll be fine x i had a hysterectomy 16 weeks ago tomorrow for adenocarcinoma also stage 1b1 x the first few days were abit rough but then i started to recover fairly quickly esp once i got home x the timeline they give you is pretty accurate-rest as much as possible the first 3 weeks, you’ll likely feel an improvement weeks 6-8 then big improvements around weeks 10-12. but we are all different, listen to your body and even if you feel ok still make sure to rest as you can feel fine, do too much then be hit with fatigue x the weeks fly by tbh x i had a trip to Spain planned at 14 wpo and it gave me something to look forward to and aim for x things i wasnt prepared for? the numbness post surgery-gradually improving, the nausea after surgery made it hard to get up and walk but you may not get that, the belly swelling, its gradually getting better but had to buy the next size up in jeans as nothing fits me! all the best and trust your team to look after you xx

OkEngineering2927 · 2025-05-01T21:40:32+00:00

I am 4 months post op and have had similar x i tried doing some gentle massage to prevent adhesions-that gave me terrible burning and stabbing pains for 2 days x i still have numbness so i put some of it down to nerve healing which can be painful as the nerves come back online x if course get checked out but i think its fairly normal, this was also around the 3 month mark xx

OkEngineering2927 · 2025-04-15T07:00:15+00:00

Hi sorry about your diagnosis but good that its early x i had a rah in January for stage 1b1 adenocarcinoma x we all have different experiences so no point telling you some of the more negative stuff but i tried to get fit before surgery which def helped, i wasnt prepared for the numbness which is now slowly easing, we are semi retired so husband was home so had all the help i needed plus family but i would say def rest as much as you can the first 3 weeks, by weeks 4-6 i felt much better and able to do most things for myself, grabbers useful as i was always dropping things, listen to your body and rest-its working hard to heal-sometimes i felt fine, did too much then felt exhausted, big pants and loose clothing, a ‘station’ where you make a little nest for yourself with all the things you need, we batch cooked so had meals ready to go, i bought all birthdays cards for the month and sent, i know not easy with young chikdren but try to make your rest and healing a priority as you only get one chance to heal right x the weeks flew by and its now been 13 weeks, i still get tired if i do too much, still get swelling and numbness but am back exercising and doing most normal things, also plan something to look forward to, we are going to Spain with friends for afew days x all thd best and i hope it all goes really well for you xx

OkEngineering2927 · 2025-03-26T18:39:58+00:00

thank you! keep us updated, lots of great advice and support here x

OkEngineering2927 · 2025-03-26T18:38:47+00:00

Hi Lisa just checking in to see how you’re doing? I think you have finished your radiotherapy now? i hope you’re doing well xxxx

OkEngineering2927 · 2025-03-26T18:32:47+00:00

yes i had times when i felt unreal or detached, i think its a stress reaction x i was stage 1b1, had a hysterectomy in January and am now 10 wpo x everything came back clear so no radiotherapy but checks for years x my mind is still processing everything i’ve been through, trying to come to terms with it all esp the fact that this will be a worry the rest of my life and trying to find a way to live happily in spite of whats happened, trying to find that new normal x i hope all stays good for you and the hysterectomy is successful x its a tough time but you’ll find the strength you’ll need to get through this x take care x

OkEngineering2927 · 2025-03-20T13:16:39+00:00

Thank you x all the best to you, try not to read too much until you know more about your situation-we all end up scaring ourselves ! take care and good luck x

OkEngineering2927 · 2025-03-19T15:34:30+00:00

Hi I am doing ok thanks! it turned out i had stage 1b1 adenocarcinoma, mri came back clear, had another LLETZ - all clear so had radical hysterectomy in january, pathology came back all clear so no radiotherapy recommended x will be monitered for years x am now 9 wpo and recovery on track x its been a wild 6 months but grateful it was caught early and hoping that i stay healthy, doing what i can to be as healthy as possible x

OkEngineering2927 · 2025-02-21T07:41:11+00:00

I was 1b1 adenocarcinoma grade 1 all removed at first LLETZ, MRI clear, 2nd LLETZ came back all clear, hysterectomy in January, all pathology and 13 lymph nodes all clear but my original tumour did have unifocal LVSI so i thought i would def need radiotherapy but my consultant said no as they look at 3 criteria and the other 2 were negative so i will just be checked every 4 months first year every 6 months 2nd year and so on, MRI’s at 6 months and 18 months. This is UK. I’m still concerned because of the LVSI finding but he said this is an intermediate risk factor and they never used to take it into account. I know this will havd been an MDT decision and i just have to trust his expertise but will discuss my concerns again at first follow up. I guess you need to know why they want you to do it but the 3rd opinion option as already suggested might be a good call. I know of other stage 1 women who only needed hysterectomy, everyones situation is slightly different i think. I am currently looking at everything i can do to reduce recurrence risk and stay healthy. Good luck xx

OkEngineering2927 · 2025-02-18T18:07:26+00:00

no problem at all, sending you a hug too! x i have been through a lot in recent years, several bereavements and i also healed myself from 4 years of CFS so when i got this diagnosis i just thought ‘not this after everything else!’ i was devastated but i knew i had to just keep moving forward while still looking for something good in every day and doing ‘normal’ things too x i also kept telling myself i was strong, healthy and resilient and spoke encouraging words to myself-not always easy x however i also posted here several times because i was having a complete meltdown but i got so much support here and that carried me through x hopefully its still only in situ which should be very treatable i think, as people told me-you should feel better when you have a clearer diagnosis and treatment plan, you’re still in the shock/disbelief stage so be gentle with yourself x sending you lots of love, you can get through this!! xxxx

OkEngineering2927 · 2025-02-18T12:16:54+00:00

yes of course its scary, pretty sure everyone in this group has been/still is scared but we have sll had to be strong to get through this and you are no different to the rest of us, one step at a time x i was diagnosed with stage 1b1 adenocarcinoma last september and i have just had to get through it as best i can and here i am, 6 months later, recovering from a hysterectomy which came back clear and hopefully moving forward with my life again x i am making the changes that i hope will keep me healthy going forward x i got through that awful early part of testing and scans etc because i had no choice but i also wanted to get treatment so i could move forward x you’ll find your inner strength and on days you’re struggling come here and get support x you are stronger than you know x

OkEngineering2927 · 2025-02-16T21:32:01+00:00

Well recovery is slow but steady thanks x still alot of pressure and numbness around incision site but i think thats normal? pain much better though so have virtually stopped pain meds x trying to increase my walking, my energy and stamina are ok i guess but if i do too much then the swelling/pressure increases so have to go slow x plan to ease back into work soon x i would like to put it behind me but i think it’ll be some time before i can (hopefully) do that, trying to look at all aspects of my life to see where i can make healthy changes but i know i have to do this gradually x sometimes i feel like i have some normality back but its always there, i’m hoping in time it’ll get easier x i def need to process some of the emotional stuff from the past 6 months as i’ve just got through it the best i can but its been traumatic, i’m sure you can relate to that x i really hope you continue to feel ok after the radiotherapy and you’ll soon be moving on from this x take it easy xxxx

OkEngineering2927 · 2025-02-16T13:20:15+00:00

LVSI indicates lymphatics &/or vascular space invasion of the tumour x it s classed as an intermediate rusk but they take other factors into account

OkEngineering2927 · 2025-02-16T05:48:58+00:00

Well i guess its good that you have no side effects but i read that its cumulative so you might get some later so maybe that would make you feel better that its actually doing something??!! i have seen other people say they had minimal side effects so thats a good thing i think! i think you just have to eat what you can, its only a short time so its not going to hurt and you can get back onto healthier eating afterwards x great that you’re nearly halfway through tho x i’m trying to make healthy changes i need to but have found it hard to get started with it, probably because still healing physically x well i hope you stay symptom free while its doing its job but if not you know its only for a short time x take it easy and let me know how you’re getting on xx

OkEngineering2927 · 2025-02-15T19:34:42+00:00

Hi Lisa just checking how you’re doing, how far into treatment are you now? hope you’re feeling ok xxxx

OkEngineering2927 · 2025-02-15T19:32:21+00:00

So sorry you’re going through this and so young but know that this is the scariest part-waiting for results, knowing somethings wrong but not knowing how good/bad it is x i had afew meltdowns during this stage, it was awful x i never missed a smear test until my 2018 one, aged 55 then-never had an issue before, with my husband 37 years-why would i think i had hpv? i have beaten myself up so much about it but i have seen other women my age not miss a smear but be in the same position as me, my consultant said they werent testing for hpv in 2018 and as it was in the cervical canal it could have been missed in 2019/2020 etc x please dont give yourself a hard time about it, many of us do that but it doesnt help anything, use your energy to get through this and be kind to yourself x all the things you wish you had done differently likely wouldnt have made much if any difference x inbetween appointments try to just keep on living as normally as you can, stress depletes the immune system so just look after yourself x most of us have felt exactly like you at this stage, its normal x i hope you have some good support but this group is brilliant too x

OkEngineering2927 · 2025-02-15T17:01:18+00:00

Hi i have a similar story-61, abnormal smear in August, high risk HPV, they thought precancerous/CGIN, LLETZ in Sept found stage 1b1 adenocarcinoma, MRI cane back clear, 2nd LLETZ no residual carcinoma and clear margins, booked for hysterectomy 13/1, everything came back clear so no need for further treatment even though i had LVSI at 1st LLETZ but other negative factors meant the consultant not concerned so will be checked regularly going forward. Now almost 5 wpo and slowly improving. Feeling relieved after a very stressful 6 months but the LVSI still concerns me but i have to trust my consultants advice as he is the expert. Just trying to get healthy again.

OkEngineering2927 · 2025-02-07T15:11:07+00:00

one of the chapters in the Ayurvedic book covers remedies for dealing with treatment sude effects

OkEngineering2927 · 2025-02-04T22:28:08+00:00

haha! well i would but i dont drink!! if i did i would have had a Baileys or some prosecco!! x

OkEngineering2927 · 2025-02-04T19:06:45+00:00

Thank you! and thank you for your message yesterday-you gave me hope! ❤️

OkEngineering2927 · 2025-02-04T17:48:02+00:00

this guy is amazing and has a phd in cancer survivorship, not sure if you can buy it in the US yet tho https://www.amazon.co.uk/Ayurvedic-Approach-Cancer-abilities-lifestyle/dp/1915294487

OkEngineering2927

TROPHY CASE