Re: Scared and Lonely

Hi LudoLovesMummy and welcome to the group!

Congratulations on your pregnancy, but I’m really sorry to hear what you’re going through right now. I’m afraid I don’t have a similar experience to you in that I’m not pregnant or undergoing investigations currently but I‘d like to just say a few things in answer to some of your questions if I may, in the hope it might reassure you a little.

The most important thing is PLEASE stop googling to try and diagnose yourself. It’s honestly the way of madness, and will ramp up your anxiety without telling you anything that’s relevant to you. It cannot diagnose you, and you cannot diagnose yourself from the internet by making your symptoms fit to something you’ve read. 

It is highly unlikely that you will find anyone in this group who has had adenoma malignum-it is an incredibly rare subset of an already less common form of cervical cancer.  I have been in multiple cervical cancer groups, some with over 1000 members, in the last 4 years and have never encountered a single person with this form of the disease. These groups have members from all over the world. 

Doctors do not lie to patients to protect them from bad news. At the moment they simply don’t know exactly what is wrong, and will be cautious until further tests give a definitive result. 

The referral to colposcopy is likely to be quick because you are pregnant. Nothing more sinister than that.

The 2 week referral ensures you are seen more quickly than other patients, but doesn’t mean you have cancer. Your doctors want to investigate what these little white lumps are, and a 2 week referral is the quickest way to do that.

Your panic and anxiety is coming through in every word of your post, but please try not to work yourself up into a frenzy before you know anything. I think you’re reading too much into everything at the moment, understandably, but this level of anxiety isn’t good for you or the baby.

The way I got through waiting, and I’ve been through a lot of investigations and had lots of waiting, is to try and stay in the now. Not think too far ahead, and avoid imagining some sort of worst case scenario. Mindfulness is helpful, meditation, and simply keeping yourself distracted-watching tv, reading, whatever you enjoy. 

I hope this might help a little, but please keep posting with us and let us know how you’re getting on. And remember to breathe!

Sarah xx

Hi Sarah,

Thank you for your response - I have seen you are an avid reader and supporter on this forum, and I am grateful you took the time to respond to me. I agree with you - and my logical side knows that Google isn't the answer, I think someone said it before though, when you have nobody else to talk to or any other way of processing information, it is the natural thing to do, but you are right I really do need to stop. 

I had read it was very rare, but hadn't realised just to what degree. There is no information really at all which makes it all the more harder to get my head around - I am someone who likes to know the ins and outs of everything so that I can prepare for every eventuality. 

It is reassuring to hear someone say that Doctors won't hide bad news, I would really like to think that he meant what he said when he suspected it was simply a fibroid growing (and again, where it is located is apparently a rare place so who knows) rather than just sugar coating and not wanting to upset me because I am pregnant. 

I work from home and find the silence incredibly deafening right now, perhaps I need to try to get out and about a bit more during working hours to help with this.  

Can I ask about your experience if you are happy to share? 

Thanks again Sarah.

I have the role of community champ in the cervical cancer group, which is volunteer role to help and support anyone joining the community. So I do try to pick up on all the new posts and contribute to the threads, which is why my name pops up a lot!

You can read my story by clicking on my name-anyone can add to their profile in the way I have done and it can be helpful for others joining the group to read other experiences.

When I was first waiting for a diagnosis and even beyond that, I never went to Google, not once. I wasn’t in any support groups at that time and it was incredibly lonely, but I knew that Google wouldn’t help and I had faith in my doctors.

Doctors have a duty of care to their patients, they have taken their oath to do no harm, but they cannot tell you what they themselves don’t know. They can suspect any number of things, but until there is a biopsy they are just making an educated guess. My doctor saw a large tumour, visible to the naked eye but STILL didn’t tell me he though it could be cancer. I’m glad he waited until he was certain as it saved me from so much anxiety waiting for results. 

So the doctors are not hiding information from you. If you have a cancer diagnosis, you will be told straight from biopsy results-they have to tell you as a treatment plan is needed. But no-one it seems has mentioned cancer to you at this point? 

The reason you won’t find out much about adenoma malignum is because of its rarity. The numbers involved will be absolutely tiny as a percentage of all cervical cancer types even throughout the world, never mind the UK. You seem to have focused on it because of the word discharge, but many of the ladies here with the other types of cervical cancer will talk about discharge too. It’s a feature of many other gynae conditions which are not cancer too.

Sarah xx

That must have been so difficult and isolating, you are very strong to keep a level head.

I would like to think that doctors would say what they most likely think something is though, if he thought it was cancer he wouldnt have mentioned fibroids hopefully? When the two doctors and a nurse chaperone came in to the room the nurse said they are not saying it is cancer so please dont think that. So cancer wasnt mentioned as such, but was by the nurse in that context.

I have looked at this because of the white lumps on the cervical OS as well as the discharge and as well as the fact the first doctor said he had never seen this before which indicates it is rare. I agree i have no diagnosis and my mind is spiralling right now, but i do know i have two small white lumps on my cervix which is not normal, i do have increased discharge which may or may not be normal given pregnancy and that i am being referred to colposcopy which is usually the route to check for changes in cervical cells and potential cancer, i hadnt ever heard of fibroids being directed there. It would be nice to hear peoples experiences of what happens etc so i get a better understanding of what to expect. 

I will have a look at your story if you dont mind. Thank you again for reaching out. Makes me feel a little less lonely.

So, I try to turn things around to a positive slant. The nurse said they weren’t saying it’s cancer, so why assume it is? My gynaecologist must have known with me he was looking at a cancerous tumour, but he didn’t say so. They don’t guess, they rely on confirmed tests in my experience of going through this cancer twice. 

Have you read of nabothian cysts in your Google searching? Maybe that’s what you have. Just because one doctor hasn’t seen something, it doesn’t mean he has seen every eventuality. Doesn’t mean it is rare-it just means that particular doctor hasn’t come across it before. That is you making assumptions. 

A colposcopy is normally the next step after an abnormal smear test where there is an indication of abnormal cervical cells caused by the hpv virus. It is a much closer examination of the cervix, which will not necessarily identify cervical cancer, but abnormal cervical cells. If it’s any consolation, adenoma malignum is not caused by the hpv virus.

Please try not to make assumptions before you know anything…in my experience there is no point in worrying about something unless it’s confirmed. By all means look at my story, but don’t assume it’s usual or normal-we are all unique.

Sarah xx