(0)
0 Items £0.00

Deflated after 3 month check

20 posts / 0 new
Last post
Locket
Deflated after 3 month check

Sooo I had my follow up with consultant today after speaking to my nurse on Monday. My nurse read our report to say no cervical mass and lymph node significantly reduced. So I felt really positive, however after speaking with my consultant today I feel abit deflated. She has said my para aortic node is still large and they can’t be sure if cancer is still in it or if it’s just scar tissue or if lymph node will always be large now. I asked if she was pleased with response and she said yes. I suppose I just wanted the hear the words it’s gone! But she can’t tell me that yet, so my head feels abit scrambled. She also shown me MRI and the before makes me feel abit sick as my node was huge before at 8cm! It is now 2cm. She is going to see me again in February. God what a rollercoaster!

I think I just need to try and see the positives in this rather than focus on the unknown but it’s hard

X

Izzzy76

8 cm node? Are you sure it’s not 8mm? 8 cm

seems really large for a node. 

What I do know is that you are still just out of treatment and from what I’ve read treatment still works on For 6  months after  Ending. I’ve seen many stories from ladies here who didn’t get an all clear or NED for six or kore months after finishing their treatment. 

 

I completely understand your feelings though. The positive thing is you’ve had an excellent response to treatment, try to focus on that ❤️

28-8-2019 diagnosed grade 2 squamous 2B 4 cm tumor Mri suspect lymphe nodes but pet scan Shows no lymph nodes 25 radio extended field, 6 chemo and 4 brachy finished October 29 2019
Locket

Yes believe me it's cm. The consultant expressed that this was very large. So you have just confirmed my thoughts that it is large for a node and it's making me feel quite sick. Gone from feeling positive to lost within 24 hours 

Petesdragon
Petesdragon's picture

Hi Locket,

I am so sorry to hear you are finding this so tough. I think the concept of being told "all clear" is a bit of a myth. The best you can hope for at any stage is NED, no evidence of disease, as anyone can have microscopic tumours (including people who have never knowingly had cancer!). I have had an enlarged lymph node for decades. That said, I have personally never heard of anyone having an 8cm para-aortic node before, are you quite sure it wasn't 8mm? above 1cm is often considered sinister and 8mm would have been enough for them to want to monitor it. 

To me it sounds like you have responded well and it's all good news. This is the way all us post cancer ladies have to live, you will adjust to this new way of being and enjoy life again.

Karen x

    • Stage 3 Glassy cell adenocarcinoma  1997 (negative smear tests).

Treated with Wertheim's hysterectomy, chemorads.

October 2017- new squamous cell vaginal tumour diagnosed,  probably radiation-induced. 

Total pelvic exenteration on 19th December 2017. 

March 18 Post-op CT scan shows healthy kidneys and successful urostomy and colostomy. No evidence of recurrence. Discharged by urology and colorectal surgeons. 2 down and 2 to go!

June 2018. CT scan shows 2 new pulmonary nodules.  

CT Scan Jan 2019. Nodules gone. No evidence of disease. 

Locket

Thank you, yes I'm sure about the size and I wish j hadn't posted now as it's making me feel worse that my thoughts are confirmed. I feel so shocked and sad with the whole thing. I've had enough. Feel like this isn't going to end well for me. I may have to take some

time out from It all. X

Izzzy76

 

8 cm does sound big for a node but keep in mind your treatment is still working and it already is 75% smaller. Your doctor is positive, try to listen to what she is saying and not to what she is not saying :) 

 

28-8-2019 diagnosed grade 2 squamous 2B 4 cm tumor Mri suspect lymphe nodes but pet scan Shows no lymph nodes 25 radio extended field, 6 chemo and 4 brachy finished October 29 2019
Weepingwillow
Weepingwillow's picture

Hi Locket

I am sorry that you find yourself In a state of worry after your appointment. I can totally relate to the upset of not getting told you are NED at 3 months post treatment as for me it took over 9 months! My situation was different in that it was my cervical tumour that was questionable and it took several scans post treatment (5 in fact) to get good news so please don't loose hope. I would be reassured that you have responded to treatment and significantly so and that your consultant does not want to see you again until February. MDT decided to do just this with me and within similar timescales, I believe they do close comparisons on the repeat scans and this gives an indication if it scar tissue. I totally understand the stress it will cause as I went into full panic. I booked lots of nice outings and holidays and I found complimentary therapies helped with the anxiety. I had reiki, reflexology and hypnotherapy and your nurse if you are interested should be able to refer you. Please be assured we are all here for you and can support you through your wait xx

Locket

Thank you for all your responses. I have calmed a little and trying to remain positive. That I have responsed and consultant was happy. I think the shock of the node is still a lot to take in. Time will tell and it seems this is cancer and the journey and for now I've responded to treatment. X

Petesdragon
Petesdragon's picture

You have responded brilliantly! We all get anxious but you do seem particularly so. Have you attended any counselling? I see a clinical psychologist currently at the cancer unit and it helps hugely. Don't suffer alone.

Karen 

    • Stage 3 Glassy cell adenocarcinoma  1997 (negative smear tests).

Treated with Wertheim's hysterectomy, chemorads.

October 2017- new squamous cell vaginal tumour diagnosed,  probably radiation-induced. 

Total pelvic exenteration on 19th December 2017. 

March 18 Post-op CT scan shows healthy kidneys and successful urostomy and colostomy. No evidence of recurrence. Discharged by urology and colorectal surgeons. 2 down and 2 to go!

June 2018. CT scan shows 2 new pulmonary nodules.  

CT Scan Jan 2019. Nodules gone. No evidence of disease. 

Locket

Is that how I come across? Lol. 
I am attending a hope course at the moment ran by Macmillan. I am still on waiting list for counselling. 
X

lboyle89

I understand how you feel. My first post treatment scan was a 'well there's nothing obvious, we'll scan you again in another three months' I so desperately wanted them to tell me 'all clear!' so I get it, but the radiation does continue to work and everyone on your team seems positive to me so go with that :-) XX 

Petesdragon
Petesdragon's picture

 Ha ha, well you have had several postings about various aches and pains so I think you might be allowing this bxxtard  to rule your life. Don't let it, because if you do, it has won. Use whatever means necessary to stay on top. The Hope thing, counselling (yes, the waiting lists are long) anti-depressants, putting yourself first from time to time, etc etc. And yes, whinging on Jo's of course, we all get it!

Karen x  

    • Stage 3 Glassy cell adenocarcinoma  1997 (negative smear tests).

Treated with Wertheim's hysterectomy, chemorads.

October 2017- new squamous cell vaginal tumour diagnosed,  probably radiation-induced. 

Total pelvic exenteration on 19th December 2017. 

March 18 Post-op CT scan shows healthy kidneys and successful urostomy and colostomy. No evidence of recurrence. Discharged by urology and colorectal surgeons. 2 down and 2 to go!

June 2018. CT scan shows 2 new pulmonary nodules.  

CT Scan Jan 2019. Nodules gone. No evidence of disease. 

emmz13

Hey lovely, 

I am so pleased that you have some wonderful news to share regarding your tumour and as for your pesky lymph node the fact that your consultant isn’t jumping on it straight away but waiting till february is surely a more positive sign. My consultant said that scans at 3 months can at times be misleading due to effects of the radiation and therefore won’t let me have a scan for 6 months so hopefully we’ll get our first proper NED’s around the same time!! 

I have written myself off so many times and this constant feeling of doom is a toughy, but no matter how long I have left and how many fights all any of us can do is make the most of it and not let sh**ty cancer rob any more from us. 

Try to stay positive lovely, it’s a hard road that keeps on testing us but you are strong and I hope that Macmillan can help. 

Much love xx

 

May 19 odd symptoms

03/06/19 doctors appt internal exam, said everything looked fine, did smear. 

10/06/19 urgent colposcopy due to HPV positive and severe changes. 

21/06/19 consultant sees 2cm tumour takes punch biopsies. She’s pretty sure it’s cc.

24/06/19 cancer confirmed, grade 3 preliminary staging 1b.

03/07/19 X-ray. 08/07/19 MRI and PET scan. 10/07/19 MDT meeting

15/07/19 restaged 2b parametrial invasion no lymph node involvement.

16/07/19 treatment 5 1/2 weeks chemorads

18/07/19 planning MRI 26/07/19 preassessment Chemo

05/08/19 chemorads start

11/09/19 chemorads end!!!! 

16/09/19 Brachy

19/09/19 DONE!!!! 

Locket

Thank you for your kind words.

I think because I no longer know what normal feels like I'm in a constant state of what's that, what's this! I hate it and currently it's ruling my life I don't know how to not let it. I was hoping the 3 month scan would give me closure but it's made me feel worse! Still got aches and pains and generally feeling abit fed up with everything. I just have this general feeling of doom that I can't shake off! Some days I feel more positive but right now I'm struggling. Any tips on how to remain positive welcome from any lovely lady is welcomed xx

Izzzy76

I van completely relate to what you are feeling. I’ve just had my intake for psychological counseling yesterday and I hope they can help me deal with this major shitty situation. 

 

Only thing I can say is you are not alone in this. From what I’ve read ( and I think I’ve read every single posting here) things Will get better over time. And Reading stories from Karen for example , look at her journey and how she is one of the most uplifting and positive people here. I truely get hope from het and many other stories. It just can’t be and feel this bad forever. It just takes time to heal from this major trauma which we had to experience. 

28-8-2019 diagnosed grade 2 squamous 2B 4 cm tumor Mri suspect lymphe nodes but pet scan Shows no lymph nodes 25 radio extended field, 6 chemo and 4 brachy finished October 29 2019
Mariewendy79
Mariewendy79's picture

Hey Lottie,

I'm in the same boat. I had my first post treatment scan results come back and it wasn't what I was hoping for. My original HUGE tumour had practically disappeared which was amazing and the specialist was well happy with it. My lymph nodes not so good they were still swollen and my pet scan was showing up NEW lymph nodes, which could possibly mean another round of treatment for me. Have been re scanned and an currently waiting for the results next week to see which way we go.

All we can do is take the POSITIVE out of every situation, at least the main tumour responded and I've read many stories in here people don't get the results they want first time round so I'm one of them. If I have to have treatment again then fine BRING IT IN!!! cos I've done it before and I'll do it again. I befriended a girl while going through treatment together and her results were horrible her cancer had spread and become terminal, So I feel things could be a lot worse, and carry on to be as positive as I can.

your not alone with the aches and pains either, I suffer every day with one thing or another, neck the painkillers and get on with it as best you can. I haven't even returned to work yet it's been 8 months total.

take care, stay positive managing to get this far is not easy by far so be happy and be proud of yourself 

Marie xx

15th Jan 2019 - Abnormal smear

28th Jan 2019 - Colposcopy LLETZ biopsy CC suspected

4th Feb 2019 - MRI scan

7th Feb 2019 - Biopsy + MRI results cervical cancer confirmed 

21 Feb 2019 - PET scan. Oncologist meeting, stage 3b CC lymph involvement

1st March 2019 - Ureteric stent op

20th March 2019 - Start treatment, 25 radiotherapy, 5 chemo/Cisplatin, 3 weekly brachytherapy 

5th Aug 2019 - MRI scan

7th Aug 2019 - PET/CT scan

AWAITING RESULTS!’

 

Locket

Thank you all for your kind words. We really are all superwomen. 
I'm getting there slowly and taking each day as it comes. Life is for living and I'm looking forward to a wonderful Christmas with my family. I'm not cooking this year!! 
I have been an anxious mess of late but I won't let this beat me mentally. I will remain strong and positive because that's all we can do. 
In the new year I'm looking at some fundraising ideas for Jo's as without this site I don't know where I'd be. Keep fighting girls! Xx

Izzzy76

Hugs, you are doing fantastic. ❤️

28-8-2019 diagnosed grade 2 squamous 2B 4 cm tumor Mri suspect lymphe nodes but pet scan Shows no lymph nodes 25 radio extended field, 6 chemo and 4 brachy finished October 29 2019
Rissag

Hi locket, I'm glad to see your in better spirits. I do feel like with time things get a little easier, hope you enjoy your holidays and have a good rest of the year!

  • 01/22/2019 abnormal pap results 
  • 04/04/2019 colposcopy/ punch biopsy 
  • 04/15/2019 diagnosed with squamous cell carcinoma stage 1b2 6cm tumor 
  • 5/10/2019 egg retrieval surgery. 2 eggs retrieved and frozen 5/23/2019. 5 slit laparoscopic lymph node removal surgery and ovary transposition. 1pelvic lymph node involvement, bumped up to stage 3
  • 6/19/2019 started radiation and chemo
  • 8/5/2019 4 brachytherapy. Finished cancer treatment 25 radiation 5 chemo and 4 brachytherapy,Awaiting scan in November 
Pet scan results NED 11/13/19
emmz13

Hey locket, 

I hope that you’re doing ok and getting ready for an amazing Crimbo with the family. I think about you often and hope that the new year will be an amazing one for you.

loads of love xxx 

May 19 odd symptoms

03/06/19 doctors appt internal exam, said everything looked fine, did smear. 

10/06/19 urgent colposcopy due to HPV positive and severe changes. 

21/06/19 consultant sees 2cm tumour takes punch biopsies. She’s pretty sure it’s cc.

24/06/19 cancer confirmed, grade 3 preliminary staging 1b.

03/07/19 X-ray. 08/07/19 MRI and PET scan. 10/07/19 MDT meeting

15/07/19 restaged 2b parametrial invasion no lymph node involvement.

16/07/19 treatment 5 1/2 weeks chemorads

18/07/19 planning MRI 26/07/19 preassessment Chemo

05/08/19 chemorads start

11/09/19 chemorads end!!!! 

16/09/19 Brachy

19/09/19 DONE!!!! 

More Information

Moving forward from a cancer diagnosis