Waiting for staging? Scared and pregnant

Recently diagnosed with cervical cancer
1

Hi everyone

I am so glad I found this site. I’ve been reading lots of posts and feel very warmed by everyone’s support to each other.

I am 29 years old and from Australia. I had an abnormal pap 4 weeks ago with HSIL. I have never had an abnormal pap.
I then had a colposcopy and biopsy. The biopsy came back has high grade precancerous cells. But the gyn onco was not convinced and today I went to hospital and underwent GA to have another colposcopy and wedge biopsy.
The oncologist will not say if it’s cancer but is basically saying ‘it is’. He keeps saying it ‘looks nasty’ and that he is ‘highly suspicious’. He is already talking getting an MRI done. He said he cannot say it is cancer until he gets the pathology results but he thinks it is.

My results will be in til next Wednesday. So I am very scared.

And I am also 16 weeks pregnant which makes this very scary. It is my first pregnancy and I hope to keep the baby. Baby was fine today under GA.

Because I am pregnant I think that is why they are rushing everything for me because he said that the 2nd trimester is the safest time for anything to happen.

He only said one thing of encouragement which is that he thought it had not spread from what he could see.

He also said that it looks ‘early’ but also said there is a 3cm section of abnormal looking cervix. Which sounds large to me. He did say that not all of the 3cm could be cancerous so I am banking on that.

I am absolutely terrified. My mum and boyfriend have not left my side.

Has anyone ever experienced this?

I feel so sad but I want to be positive.

2

Hi Starlight.

I'm so sorry to hear what you're going through. I was diagnosed when i was 26 weeks with my first baby. My tumour was 4cm and the surgeon said it was growing downwards which was a good thing. We decided to wait until I was 32 weeks to do a caesarian section and a hysterectomy.

Waiting for staging is the worst part. I would advise you to stay away from google as it will do nothing but worry you. I hope you find out soon and have a plan of action. If you have any questions feel free to message me privately. 

Cara xxx

3

Hi Starlight,

Big hugs to you. I'm so so sorry that you have to go through this. It's normal to feel frightened especially so when you are now pregnant. I was diagnosed with a 5cm tumour only after an emergency C-section at 34 weeks. At that time, I was really terrified for my life, thinking I won't be able to watch my baby grow up. I grieved a lot back then. But here I am, baby girl is coming to 18 months. I totally agreed with what Cara said, waiting for staging is the worst part. At that time, I couldn't stop but imagine the places the cancer would go. But trust me, once the staging is done and with a treatment plan in place, you will feel better. Surround yourself with loved ones and activities. If you feel sad, just give yourself time and space to feel what you feel. What helped me through was a blog that documented the journey and lots of prayers. Feel free to ask me any questions. May God bless and protect you and your baby.  

4

Just wanted to send you my prayers and hugs, very pleased that you have lovely support from your mum and boyfriend. And you have definitely come to the right place for support. Lots of love Xxx

5

Hi Starlight :-)

Just wanted to give you a big warm welcome and a hug. Definitely, definitely hang out here and keep well away from Google. There are other women around on the forum who have had to deal with a cancer diagnosis and pregnancy and I hope they rally round to support you very soon. I have never been pregnant so I'm not much use to you I'm sorry to say but I am good at hugging :-)

(((((HUGS)))))

Be lucky :-)
Tivoli

6

Hi girls 

 

Thanks so much for your replies and making me feel welcome. 

I am so sorry we all have had to experience this. 

I am really devastated because my doctor called me today and told me it is stage 2b. He said it has spread to the tissue between the cervix and the uterus. Not in the uterus yet but in the tissue right next to the uterus. 

I am really scared about this. 

He mentioned having chemo and said if I wasn't pregnant I would be starting chemo and radiation next week. 

I asked him if I need a hysterectomy and he didn't say no but said that is most likely. 

I told him that I really want to keep the baby if it is my only chance at having one. He said that they will consider doing chemo while I am pregnant. 

I am so devastated. I am meeting with the doctors on Wednesday to discuss treatment options. 

I am so scared of losing the baby and having a hysterectomy. 

Does anyone have any advice? 

7

Sweet heart, i dont have any advice as i am so very new to all this too but i just wanted to send u soooo much love n healing thoughts and prayers. Xxxx

8

Hi Starlight.

I'm really sorry :( 

I completely understand you want to keep the baby.

When I was going through my options i remember the doctor mentioned he knew of one case where a girl had chemotherapy when she was pregnant. I think you need to ask your doctor if he/she has any experience of this and how effective it was. 

I think you also need to ask on the type of cervical cancer you have...is it particularly aggressive? How long do they think you could safely leave things or just have chemotherapy to try to shrink the tumour.

Also, you want to speak to the neonatal unit at the hospital to see how early they would be prepared to deliver the baby given the situation. 

So sorry again.

Cara xxxxx

9

So sorry to hear this big big hugs, how are you? 

Hope they come up with a care plan that's right for you and baby. 

Make sure you keep posting on here whenever you feel down or questions etc. 

lots of love

Xxx

10

Hey girls 

well in 24 hours time I will know what the doctors recommend I do. I know they will tell me to terminate and start treatment asap. But I have already told them that I want to keep this baby and am prepared to do chemo whilst pregnant. I think if the spread is so minimal hopefully the chemo will kill off the spread even if the tumour doesn't shrink drastically. 

The doctor told me on the phone that I will make the decision on treatment so I feel good that he is giving me some power. 

I was wondering if chemo shrinks my tumour, would they maybe not need to do such a bif surgery at the end? my tumour is 3.6cm and I am wondering if the chemo shrunk it to say 2cm could they then just do a trachelectomy? Or am I dreaming? 

I spoke to a cancer nurse over the phone (cancer support service) and she told me that often doctors will use chemo to shrink tumours to then operate. Has anyone ever heard of this in relation to cervical cancer? 

I know I am reaching but I am so desperate at the moment. 

I really appreciate all the support from you ladies. It is such a comfort to have this forum. 

Also on another note can I ask you girls how long after your cancer did you start to feel happy/positive/good again? I feel a massive spiral of depression this last week and am worried it will never go away  Xxxx 

11

Hi starlight,

Once you know what the plan is I think you will feel a little better as you can focus on that and your mind will stop going in to overdrive.

I think that's a question you really need to ask your doctor. I was offered a tracelectomy even though my tumour was bigger than 2cm but personally felt it wasn't the best option for me as the surgeon wanted to do it at 29 weeks which put the baby under greater risk. I said I was prepared to do anything if they could do something which meant the baby stood a good chance of being alright and that I had the best chance as well. After speaking to neonatal who said they would be happier if the baby was 32 weeks I decided to go for the hysterectomy. I felt that the less there was in there, the less chance there was of it coming back. It had spread in to my lymph nodes and I had to have chemo/radiotherapy after the operation so even if I had the tracelectomy I wouldn't have been able to have more children anyway. 

Treatment offered may be different in Australia than here. The other stage 2 ladies will know about their treatment better than me but I'm as far as I'm aware chemotherapy and radiation are used and generally they don't require surgery afterwards.

Being pregnant complicates things and the doctors will no doubt be trying their hardest to think of the best way forward. They may want you to do what is best for you but it's not as easy as that when you're pregnant as you desperately want to keep your baby. Whatever they suggest tomorrow it really is your decision. You need to balance what it is best for you and the baby. 

I'm really sorry you are in this situation, I'll be thinking of you. If you have any questions dont hesitate to ask.

Cara xxxx

 

 

 

12

Hi Starlight,

Big hugs! My thoughts are with you. Right now, you probably can't see the light at the end of the tunnel and feeling emotionally charged. But trust me, once we get more clarity on the treatment plan, you will feel better. 

I understand from my oncologist that they give neoadjuvant chemotherapy to shrink the tumours before they operate. Depending on the individual case, they may offer trachelectomy or radical hysterectomy. I reckon trachelectomy carries a higher risk of recurrence as compared to radical hysterectomy. It will be good to pose these questions to your medical team. They will have the best advice. When I was diagnosed, my gynae oncologist just told me to listen to her and do whatever she said. So I just followed, fearing for my life. 

There is this other girl, Kristina, with cervical cancer, who went through chemotherapy when pregnant and has delivered her child. Her story was posted on Hope for Two website. A source of inspiration. This organization, although based in the United States, provides support for pregnant women undergoing cancer treatment. It might be useful for you as well. 

Don't go through this journey alone. Anytime you need to talk, just come here. There are many great ladies here who have gone through this journey, not just survive but thrive, ready to offer support. May God watch over you and your baby. Big hugs again!

 

13

Hi Starlight,

I have unfortunately been recently through a similar experience.  I was diagnosed with CC in August 2015, I found out I was 6 weeks pregnant the week before.  Unfortunately in my case there was never an option to continue with pregnancy as Cancer had already spread to my Pelvis. I regrettably never questioned the doctors and My treatment started when I was 12 weeks gone. I misscarried at 16 weeks.

Im sure your case will be different as you are futher on, Ive since read several success storys about women who had Chemo during pregnancy and went on to have there babys.  I doubt any of this information is useful but I just wanted you to know that you are not alone.

Sending you love and hugs xx

14

Hi again girls

Thank you so much for sharing your personal stories with me as well as your words of comfort. I have amazing family and friends and boyfriend but when I come to this chat it gives me so much. So thank you so much. 

Cara, I can see why you went for a hyst because at first i was saying anything but that but now I just want all the cancer out of my body and less risk of it coming back!!! That is so great that your doctors worked together to get your baby to 32 weeks and then could do the surgery. I am really hoping that is the case with me. Thank you so much for sharing the details of your story.

Ashley, I did read the story about Kristina - wow amazing story. Thank you so much for sharing that!!! And your words mean so much to me! 

AnneB I am so sorry to hear about your loss. What a brave woman you are and a brave journey you are on. How is your treatment and prognosis going now? How are you feeling now? Do you mind if I ask what stage you were when diagnosed? Also your info was so helpful too!!! 

Sarah T, Tivoli and Emma - thank you for all of your support too. 

All you girls are so brave and I hope that's me soon!!! I am still just feeling terrified. 

I am going to the Hospital in 4 hours. I am so nervous. I will let you know how it all goes. 

We are all so lucky to have this support from each other. Love to all x

15

Hi starlight ,

Im thinking of you today X I remember feeling so terrified and sick with worry too , write down everything because when your actually sitting with your doc you can become so overwelmed that your mind goes blank , I'm doing ok but so sorry for my baby who was never giving the chance to live because of my illness.  I also feel to blame and deal with a lot of guilt , it isn't something that I talk about a lot , I feel that it has been forgotten about and that the fact I'm alive I should be grateful which I am of course but at the cost of my child's life . 

I don't know what stage I was at when diagnosed , I did ask the doc but don't remember getting a reply , the fact my Tumour is on my pelvis and was about 5cm when diagnosed I assume that the fact it had spread I was stage 2 or 3 .. Thankfully it hadn't spread anywhere else in my body.  I've had a scan since treatment which showed that my cancer has gone , which is great and the docs are very optimistic.  So I am trying to get my life back to some sort of normal. I am lucky as have 3 children to keep me busy.  I'm going through menopause which is something I never taught I'd be going through at 33.  I've some side effects from treatment but other than all of that I'm doing ok , I have good and bad days.

Im sorry that I haven't found all you wonderful ladies sooner as when I was diagnosed first I really felt like I was the only woman in the world going through this, although my family and friends were there to support me they didn't actually no what I was going through. So thank you for been so brave and strong and sharing your stories , and whatever the outcome even how scary it seems we're all here for each other and you will be ok. 

Sending you love and hugs 

xxx

16

Hi Starlight,

I've been thinking of you this morning. I hope you have come to an agreement with the doctors about where to go next. 

Anne,i'm sorry you feel so guilty about the way things turned out. The loss of a child is something people shouldn't have to deal with. In your situation you did what you needed to do to be around for your three children. I imagine they will keep you on your toes! Other people tend to see you doing ok and just assume you are but it's not as simple as that I know. This forum is such good support for people going through similar situations. 

Some of my friends couldn't believe how accepting I was of not being able to have more children. At the time of diagnosis I was so scared neither of us would make it or my baby would and I wouldn't get to see her grow up. I said to myself at the time that the best possible outcome is that we both survive and I felt so lucky that we did. I know we don't know what the future holds and there may be a time when I get upset and angry about not being able to have more children but I'll just have to look back and remember how I felt at that awful time. 

I imagine we all have good and bad days but hopefully as time goes on the bad days will become few and far between. 

Cara xxxx

 

17

Just been thinking of you too. Hope you are ok xxx

18

Hi girls

Anne - it sounds to me that you made a brave and hard journey for you and your 3 children so that you can be together. But I understand that you would be greiving the loss of your baby - I have not yet lost mine but even the thought of it is so harrowing, so I imagine having to go through that - well I cannot imagine. 

Well I am sitting here balling my eyes out because today didn't go very well. The Drs said that they don't feel comfortable without checking my lymph nodes and saw one enlarged lymph node on the MRI - they said that it is not necessarily cancer, sometimes they can just be enlarged from a previous infection or fighting an infection and didn't go back down. They also said sometimes cancer nodes are normal size and they just want to make sure nothing is missed.

To do this I need a PET scan - which is not allowed in pregnancy. But they have told me they have been working on a "Safe" form of radiation for the PET scan that will not harm the baby. They said it only poses a 0.3% effect on the baby according to their calculations. They said that this PET scan will give them all the info they need.

They told me that if the PET scan shows lymph involvement - they won't me to terminate, and begin chemo/radio and have a hysterectomy (can preserve my ovaries and eggs apparently - they are going to move the ovaries out of the way while I have the targeted radio). Then they said that if the PET scan shows no lymph node involvement - then I can continue with the pregnancy and do chemo but I would need to deliver at 26 weeks followed by a hysterectomy. I told them that 26 weeks is too early and I would go to 28 weeks but they were not happy about it, but I do not see the point of going through all of this and then not giving the baby a good chance from 28 weeks. 

Now I have to wait til next Tuesday to have the PET scan, and then won't meet with them again til Wednesday. The other thing that bothers me is that they are only giving 26 weeks for the baby, yet they are taking a whole further week for this PET scan - if they were really concerned about it why couldn't they do it straight away as in tomorrow and then if all is well, that's another week for the baby added on (considering the chemo).

They said that if all goes well with the PET scan and I continue the pregnancy - then I will start chemo next Friday. 

I am now so nervous waiting for more results! I really just pray that it has not spread - but I also just do not feel confident because I feel that every time I see them, they tell me something worse than the time before. I am just ready to give up but I cannot imagine losing this baby, knowing I can never have another. I will be so devastated. 

Sorry I am feeling so sorry for myself tonight which is an awful feeling. 

Thanks for thinking of me today girls, I can feel the love all the way from here in Australia!!!

I am so worried too that I will never be happy again - unless I am able to have this baby! I am scared about how depressed I am getting. 

xxx

 

19

Starlight, I am heartbroken for you and wish I could tell you something that could help you.  Im hoping and praying that the scan will show no lymph node involvement and that you can continue with your pregnancy as long as possible.  This waiting is hurrendous and time seems to slow down, Your feelings of been scared and depressed are completely normal, youve found yourself in a situation that is the stuff of nightmares and its just not fair. Stay strong girl , sending you love and prayers from Ireland.

xxx

20

Hi Starlight,

I was welling up reading your reply, what a truly horrible situation. You are perfectly entitled to feel sorry for yourself - don't apologise to anyone for that!

Having to wait another week is awful, I wish it could have been sooner for you.  From my experience in the uk it could be that scans are only looked at or meetings are set up to have on certain days. The timescale of their plan for you and the baby has probably taken the scans etc in to account. I totally understand what you mean about getting the scan sooner and waiting another week to deliver but I don't think it will be as simple as that to the doctors. I don't know if you have found this but I found the doctors here were primarily concerned for me and the fact I was pregnant came secondary. I do understand why but it doesn't make you feel any better when you're first concern is the baby. 

I don't know what the procedure is in Australia but in the UK you can get your eggs taken out before treatment, giving you the chance to have a child in the future. I didnt know if that's what you meant when you mentioned moving the ovaries and eggs.

I really hope that it hasn't gone in to your lymph nodes, I have everything crossed for you. 

The waiting game is awful, I really feel for you having to do it yet again :( 

Thinking of you lots,

Cara xxx