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Treatment didn't work

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Southofthelake
Southofthelake's picture
Treatment didn't work

Hey Ladies

So a couple of weeks ago I had my first post-treatment MRI and it showed an anomally, Once I was informed about that I was booked to have a PET scan last monday with a follow up telephone appointment for 8th Sept. However only 1 day after my PET scan they called me to come in for a consultation for today (25/8/20). I knew it wasn't good as soon as they organised that.

Well, they found a hot spot in my cervix but it showed up in 2 different places for both the MRI and PET, so they want to do a biopsy there to check if it is active cancer or inflammation. 

Also, my cancer has spread into a number of lymph nodes in my pelvis and they were apparently showing up mega hot, or whatever term they use. 

I was given 3 options for treatment and I would love some cold hard truths from you lovely ladies on your experiences with these options as I'm left with a tough decision to make. 

1. Surgery to remove the lymph nodes, which comes with risks because now they are surrounded by scar tissue from radiotherapy. The treatment can cause numbness in the leg and also lymphodema as well as a risk of bleeding during the procedure, which is a concern. This treatment is the one they would like to do the cervical biopsy at the same time to reduce the need for multiple GAs. 15% chance of lymphodema

2. Cyberknife treatment - a new radiation treatment on the nhs that pinpoints the cancer cells directly, but the only place that does that is London and I might get rejected because of the high dose of radiation i have already had from my original treatment. Also it could take longer to get this done because of the biopsy that i mentioned above needing to be done. (Honestly, I zoned out a bit so I couldn't give all the details now). 5% chance of developing lymphodema

3.Chemotherapy for 18 weeks (once every three weeks). The drug would be one that makes me  lose my hair and there is no guarantee it would work. According to my surgeon, this is the least preferrable option.

They would prefer me to have the surgery and I have been asked to make a decision pretty sharpish (in the next 2 weeks) as the cancer being in the lymph nodes is a dangerous place and at high risk of ending up somewhere else in the body.The goal is to do something about it in the next 4 weeks.

I don't know what to do. I just got back into my mountain biking and I really don't want to have to deal with more setbacks, or have to deal with the risk of lymphodema. This is not including the possibility that there might be some active cancer cells left in my cervix and what may come if that is the case. 

Can you ladies please tell me your toughts and experiences with any of these things? 

Much love.

Michelle

October 2019 - smear test

November 2019 - results back; hpv with severe dyskaryosis, colposcopy organised.

November 2019 - colposcopy biopsy taken - confirmed abnormal cells

December 2019 - lletz performed

Jan 2020 - called in: confirmed I have cancer

Tests run through Jan and Feb. During this time went through fertility treatment; 5 eggs frozen.

End Feb - confirmed stage 2b CC (updated info, staging changed to stage 3 invlving lymph nodes)

Treatment starts March - 28 external radio/5 chemo/4 brachy

Only sat 3 chemo after developing tinnitus

April 25th - finished brachytherapy

July 2020 - MRI

Awaiting results

Izzzy76

I am so sorry you are in this position. I would however go for option 1 first. Get them out and have them perform biopsies. You wouldnt be the first lady whwre those hot spots turn out to be scar tissue and infection. You are just fresh out of treatmenr, let them double check . And rhen O would opt for cyberknife treatment in combination with chemo if possible.

 

Youll need to go through chemo fjrst before trying immune therapy. Also, ask your doctors about a total.pelvic exenteration

 By no means a walk in the park but life saving!! Wishing you all the best ❤❤

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
Southofthelake
Southofthelake's picture

Hi Izzzy

Thank you for your post. The pelvic exteneration is a massive no for me. But hopefully it never comes to that. 

My main fear about surgery is it's going to take away my ability to ride my bike comfortably and do other fun activities like climbing. These are important to my enjoyment in life. Also the chance of lymphodema is really scary.

October 2019 - smear test

November 2019 - results back; hpv with severe dyskaryosis, colposcopy organised.

November 2019 - colposcopy biopsy taken - confirmed abnormal cells

December 2019 - lletz performed

Jan 2020 - called in: confirmed I have cancer

Tests run through Jan and Feb. During this time went through fertility treatment; 5 eggs frozen.

End Feb - confirmed stage 2b CC (updated info, staging changed to stage 3 invlving lymph nodes)

Treatment starts March - 28 external radio/5 chemo/4 brachy

Only sat 3 chemo after developing tinnitus

April 25th - finished brachytherapy

July 2020 - MRI

Awaiting results

LaurieBeth

I don't have advice for such a big decision except to say I would likely choose the option your doctor's suggested as the best option.  It seems like the risks of the other options also outweigh the risks of that one. Mainly I just wanted to take a minute to say I am so sorry that this is where you find yourself and that I am sending all my best thoughts and energies your way.

LBA 

11/18Abnormal Pap CINIII

12/18Colpo confirmsCINIII

12/18Cold Knife cone biopsy confirms CiNIII, clear margins-doctor suggest hysterectomy

1/19 second opinion-close monitoring appropriate

5/19, 8/19 paps and colpos CIN I

2/20 Pap reveals CIN III

3/17/20 Lietz under GA

3/20/20 Diagnosed with invasice cervical cancer, no clear margins

5/12/20Radical Hysterectomy, Lymph node dissection, ovarian transposition-Staged 1B1-no further treatment needed

Follow up 9/28/20

 

 

Petesdragon
Petesdragon's picture

Hi South of the Lake.

I am sorry to hear all this. I wouldn't worry about lymphodoema, that's usually quite manageable. Dealing with the spread is the key issue. I would recommend you ask to join the advanced side where there are members who have tried all these treatments. You might liase with the lady called Nicky who is in similar position and considering chemo.

Exenteration isn't an option if it has spread outside the pelvis. You would need to get the spread under control first. I know you say it's a no but you may change your mind when you have processed all the information should it become an option later.

Good luck,

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. 

rufus

Hi Southofthelake,

Sorry you are having such a battle at the moment.  I agree that option 1 would be my choice.  I had a radical hysterectomy with lymph nodes removed in March.  Although I know that lymphoma is a risk, it hasn't happened yet, but it is a small price to pay in the scheme of things.  There is a chance that by going with the surgery they might find that it is scaring/infection ect.  One of the things I have learned on this journey is that scans only tell you so much.  It's the histology that gives you an accurate picture.  Also, I'd always go for the GA, knocked out is the way to go!  Recovery goes by quickly and before you know it you'll be back on the bike!

Good luck with whatever you choose to do.  
Much love

Xx

Lletz under GA on 19/3/20, mri on 21/3, Results cc: stage 1b no sign of lymph involvement. 18/4/20 Radical hysterectomy with lymph node removal 6/5/20 Histology shows microscopic Involvement 2 nodes. Moved to stage 3c. Chemo rads completed 10/7/20 Brachy 14/7 Done!

Jazza
Jazza's picture

Hi Southothelake

Oh my, what a decision to be confronted with.

I'm biased on account of having had a rough time with lymphoedema: I have to wear a custom made high compression stocking to maintain my swelling and toe caps because my foot is affected - very difficult to find  a pair of shoes to fit both feet now.  I can't do long walks or go running any more to mention just a few of the ways my life has been impacted , albeit with time one does adapt.  However it seems I have been particularly unlucky in terms of the lymphoedema although I haven't yet come across any good studies on the subject. 

The main problem with chemo seems that it is the least likely to work and, although your hair would grow back, I guess could also result in permanent side effects?  I think if it were me I would want to further investigate option 2 as long I didn't feel I was losing too much time before getting treatment.  I like the idea of radiation that pinpoints the cancer directly and it minimises the chances of lymphoedema - but as I've already said I'm very biased about that.

Don't know if this helps or confuses.  I wish you well in your decision making.

x

  • Feb 04:  (age 47y) Smear test normal
  • Stopped going for smears!
  • Summer 16: persistent watery yellow vaginal discharge
  • Dec 16: PMB
  • Jan 17: Hysteroscopy under GA for ?fibroids - abnormal cervix observed -multiple biopsies taken, 1B1 (1B2 on new FIGO) squamous cell cc diagnosed - confirmed by MRI/PET scans
  • Feb 17: pelvic lymphadenectomy - nodes negative, Da Vinci radical hysterectomy- close anterior margin/LVSI/PNI, restaged to 2A1 (2A1 on new FIGO)
  • Apr/May 17: 6x chemo, 25x external radio, 2x brachy
  • May 20:  NED.  Side effects notably hypotonic bladder since hysterectomy - ongoing ISC, unilateral lymphoedema lower abdo/groin/leg/ankle/foot
Southofthelake
Southofthelake's picture

 Thanks for your words of advice ladies. I really appreciate it.

I spoke to a councellor with macmillan and we went through some stuff and i found some info online that said cycling is a good way to manage lymphodema (if it should happen). So I won't be cut off from that at least.

My oncologist called me back in the day after my initial appointment regarding all this and showed me my PET scan and went through everything with me again. The scan calmed me down a bit. The anomally in my cervix wasn't coming up as hot as my lymph node so I am not freaking out about that for the time being. I will wait for the biopsy.

But I let my nurse practicioner know that I will go ahead with the surgery and I'll go through all the details that entails with the surgeon in a couple of weeks. Perfect timing for my treatment team to be off. lol.

I'm still scared of what may come. Mostly because I already have very low self worth, and if this went wrong then it would just plummet even further. But fingers crossed for the best.

October 2019 - smear test

November 2019 - results back; hpv with severe dyskaryosis, colposcopy organised.

November 2019 - colposcopy biopsy taken - confirmed abnormal cells

December 2019 - lletz performed

Jan 2020 - called in: confirmed I have cancer

Tests run through Jan and Feb. During this time went through fertility treatment; 5 eggs frozen.

End Feb - confirmed stage 2b CC (updated info, staging changed to stage 3 invlving lymph nodes)

Treatment starts March - 28 external radio/5 chemo/4 brachy

Only sat 3 chemo after developing tinnitus

April 25th - finished brachytherapy

July 2020 - MRI

Awaiting results

Locket

How strange - I came on here to get some information and support and your post was almost written like it was me. 

I too have similar concerns that one of my lymph nodes, although hasn't grown in a year, they suspect it has active cancer in it still. So im

going to see consultant on Wednesday to discuss options. I have been advised I can't have anymore radio but I will ask about cyber knife. 

I have been told it's either surgery or chemo. Although surgery is what i am swaying more towards. I want it out! But mine is sitting on an artery and they are concerned about that... but for me chemo is the last thing I want. I'm hopeful that they can help me and on the phone my nurse said they want to help me get rid of the pain in having so I can enjoy my life. To me that reads positive! 

sending lots of love and hugs 

x

  • April 19 - colopscopy 

May 19 - diagnosed 1b

MRI and CT confirmed spread to 2 lymph nodes - large one in para aorta. June 19 - started treatment cisplatin and radio. Aug 19 - brachytherapy 

Nov 19 - positive 3 month follow up 

February 20 - positive follow up 

April 20 - Postive CT scan 

July 20 - positive CT scan and advised back pain is treatment related. 

Aug 20 - pet scan shows still active cancer in lymph node 

awaiting further treatment..

 

 

 

Memagh

Southofthelake, 

Im really sorry you find yourself in this difficult position after all you've already gone through. I've never had lymph nodes removed or suffered from lymphoedema (yet) so im afraid I can't be of any help there. I think you may find more answers to your questions on the advanced forum. I know whatever option you choose will be the right one for you. Best of luck!

x Maria

Diagnosed CC 01st August 2019 Stage 1b2 with 1 local lymph node involved. Something else showed up on pet scan. Treatment delayed for surgery, done on September 9th. Found to be a simple ovarian cyst, 1 ovary and tube removed. Treatment plan 5 chemo, 25 radio and 4 brachy. Treatment start date 02nd October 2019. Treatment end date 8th November.

February 2020 3 month scans NED

August 2020 9 Month scans NED

 

 

Memagh

Hi Locket, 

Sorry to hear you're still suffering too. It must be really difficult mentally to have to continue to deal with all of this. I hope you have a strong support network to help you through and that the pain eases for you soon. Definitely ask about the cyber knife. It's relatively new but showing some promising results. Best of luck on Wednesday, will be thinking of you.

x Maria

Diagnosed CC 01st August 2019 Stage 1b2 with 1 local lymph node involved. Something else showed up on pet scan. Treatment delayed for surgery, done on September 9th. Found to be a simple ovarian cyst, 1 ovary and tube removed. Treatment plan 5 chemo, 25 radio and 4 brachy. Treatment start date 02nd October 2019. Treatment end date 8th November.

February 2020 3 month scans NED

August 2020 9 Month scans NED

 

 

Izzzy76

Hi Locket, I just noticed your posting on the advanced forum, are you okay or did something come up on your pet scan?

 

Hugs,

Suzanne

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
Play_Pretend
Play_Pretend's picture

Southofthelake: i just want to give you a hug and tell you i am so sorry to hear this news :( cry

I would go for the surgery option.. chemo will always be an option. Surgery will not. 

Locket: i'm so sorry to hear about your bad news too. Lets hope they can remove it with surgery and that it will be cured. 🤞🏻 Hugs 

Stay strong you two! Xxx Laura

March 2019:

-Tumor discovered staged at 2b, squamous cell. No lymphnode involvement.

April/may 2019:

-Chemoradiation 5x/23x and interstitial brachy 4x

August 16 2019:

- 1st check up: NED

November 2019:

(NED). Some hard tissue is felt, probably scar tissue.

February 14th 2020 -NED  

May 2020- NED

July 2020- NED

God promises to make something good out of the storms that bring devastation to your life

- Romans 8:28

Locket

Thank you.

Izzy - I thought I would get some information from the advanced ladies. My pet scan shows lymph node still active. Although not grown in a year it is causing me some grief. I'm hoping they can offer a safe surgical removal but possible will need more chemo and or other treatments. 

X

  • April 19 - colopscopy 

May 19 - diagnosed 1b

MRI and CT confirmed spread to 2 lymph nodes - large one in para aorta. June 19 - started treatment cisplatin and radio. Aug 19 - brachytherapy 

Nov 19 - positive 3 month follow up 

February 20 - positive follow up 

April 20 - Postive CT scan 

July 20 - positive CT scan and advised back pain is treatment related. 

Aug 20 - pet scan shows still active cancer in lymph node 

awaiting further treatment..

 

 

 

Izzzy76

Ahw I am so sorry to hear this, is this node withi  the radio-field? If not, protonbeam radiation or a cyberknife treatment might be worth looking into

 

 

Wishing you all the best ❤ 

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
KarG

I had a second major op to tackle cancerous tumour in lymph nodes - para aortic - after the operstion I was told that the tumour had actually grown around a major artery.  Anyway, it was a big operation - 12 inch cut - nevertheless I still went on holiday a few months later and even had great fun bodyboarding in the surf in Portugal.  I have continued to be active - swimming, walking and cycling holidays.  I do have post radiotherapy problems now (well at least I think that’s what they are) but I really just wanted to say go for it, trust your medical team and keep on planning all the good and exciting things you want to doin your life.  Good luck. 

Karen

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Moving forward from a cancer diagnosis