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Unexpected news

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smariew
Unexpected news

Well, we got the results from my PET scan today and it was not what we hoped. There is still presence of the disease not only in my cervix but lymph nodes, it did not respond to the radiation or chemo in the way we hoped. Next step they are testing my biopsy sample to see if I'm right for immunotherapy (keytruda & avastin) is what dr mentioned. As well as looking into clinical trials. 

can someone tell me a little about immunotherapy and your experience with it? More than ever I'm frustrated and scared that this treatment won't work either. And mad I'm just mad. Anyways, any advise would help. 

28 y/o. 2B adenosquamous glass cell carcinoma  6cisplatin, 32 external radiation, 6 internal & carbo/taxol 4 rounds

Southofthelake
Southofthelake's picture

Hi Smariew

I am sorry to hear that your battle is not over yet. This kind of news can only be unwelcome and I completely understand your fears - and your anger. I am in the same boat, although I was not offered the immunotherapy. When my surgeon told me I went cold even though I knew what was coming, and I became hard and sharp towards him and a bit mad too. I mean, it's not really his fault but managing your emotions in that situation is very difficult.

I do hope that someone here can give you some info about the immunotherapy and it can help quell your fears. 

PM me anytime.

Best.

xx

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

Petesdragon
Petesdragon's picture

Hi Smariew,

I am sorry to hear your difficult news.

Like Locket and South of the Lake, the best advice will be available in the advanced section.

Can I just ask though, where are the affected lymph nodes? If they are in the pelvis then curative surgery might still be possible. 

 

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. 

smariew

Thank you both for your messages. The lymph nodes affected are resting on the iliac artery. I've been told by 2 oncologists that surgery is not an option in my case although my sister is sending my files to a 3rd. It might be important to note that I am in the US not UK. 

Southofthelake
Southofthelake's picture

Hey Smariew. 

Have they said why they can't operate? I have the exact same lymph nodes involved as yours and they put huge emphasis on trying surgery first.

 

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

smariew

Yes we got a bit more info. There are small masses on those nodes but there are cells I guess on many pelvic nodes. My PET imaging "lit up". We consulted w a few more surgeons who all told us that even an 8 hour surgery wouldn't be long enough to address all the nodes involved. So the goal is to get a handle on the lymph nodes, stop that spread either w the immunotherapy or clinical trial. Once that is under control I will get a full hysterectomy. 

Southofthelake
Southofthelake's picture

That sounds awful. I really do hope the immunotherapy works for you and as the other ladies above have said, it might be a good idea to head over to the advanced forum and speak to the ladies there.

Best.

x

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

Play_Pretend
Play_Pretend's picture

Oh no :( i am so sorry cry

I really hope that the immuno will cure you. I am at a loss for words.. so very sorry honey. 

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

Petesdragon
Petesdragon's picture

Oh that's tough. I think you could request the advanced section where there is more expertise on these treatments there.

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. 

Abi88
Abi88's picture

I'm sorry to hear this news, although I have no information on immunotherapy with CC my mother in law is currently having it for a tumour in her lungs. She had her first scan last week after having about 8 weeks of treatment and her tumour has halves in size. She's not really struggled with many side effects either and being in her 70's and in poor health she's doing extremely well with it xx

smariew

That's great to hear, I'm glad she's doing well on it! I was approved for keytruda and will start this week! 🤞🏼

Shewolf

Can I asked where you were approved for Keytruda? 

Thank  you,

Claire. 

1/16Vaginal bleeding

12/16Stage 2b

Jan-Mar 2017 35 EBR 5 x Cisplatin

6/17 All clear

12/17 2.5cm tumour,incurable

3/18 7 x carbo/Taxol/Avastin

8/18 MRI CT-PET cancer free.3 Carbo/Avastin 11/18 remission

4/19 15mm endocervix recurrence

7/19 -8/19 5 x SABRE LINAC

11/19 MRI- treated area stable,but tumour growth at uterine fundus and full thickness of myometrium.

Surgical opinion 4/12/19 laparoscopy cancelled 27/1/2020 CT PET tumour 12.5cm,no mets possible Pagets disease. Surgery ruled out 28/1/2020 Biopsies taken

2/2020 started 6 cycles of Doxirubicin and carboplatin

7/20 tumour active again. Platinum resistant. No further treatment availabile. 

More Information

Treatments for cervical cancer