They can't tell me it hasn't spread. Am so terrified

I have posted about this before but got no replies. Don’t know where else to go for help. I’m sure my consultant and BC nurse just think I am a hypochondriac but this is my life, the only one I will have and the only mum my young children will ever have so it matters!
I have stage 3 mucinous cancer. Had a mastectomy 4 weeks ago. No lymph node involvement. Waiting to start chemo. As I was so worried this had spread I paid for a ct scan. The oncologist said they wouldn’t normally scan anyone who had no lymph involvement. The scan showed a small area on my lung the consultant said he was pretty sure was infection left from the op. It also showed a small lesion on my liver only 7mm that he said he strongly believed to be nothing (a cyst, hermangioma??) but as it was only 7mm it was too small to biopsy. He said to go through chemo and then re scan. He could find nothing that showed met disease but he couldn’t tell me this was definitely not cancer. I also have a lump begging my ear lobe which is giving me a stiff neck. He said nothing showed up on scan and he felt lump and said it was nothing. I asked how he knew and he said he knew what lymph nodes felt like. My neck is so stiff.
I am so scared. More than I can explain. I look at my 3 children everyday and I am really not coping. I am so terrified that this has spread. He said it is common to find small unidentified lesions as ct scans are so advanced. But I have spoken to so many people who have had breast cancer and nobody else has had this.
Not coping at all.

Hi Caz13

Sorry to hear that things are so difficult for you at the moment. Its definitely a shock to the system to have a bc diagnosis and unfortunately part of it seems to be learning to live with some uncertainty. Having to wait for scans and results is not easy and unfortunately there is a lot of that in the early stages of treatment and diagnosis.

I found that it settled down a bit when chemo started - so I could concentrate on that.

The positives are that your nodes are clear and in the doctors opinion the ct scan is also ok. That’s good news. I think you’re doing the right thing by coming onto this site and connecting with others in the same boat. Have you thought about joining the monthly threads once chemo starts? It’s a big help to connect with others who are starting treatment at the same time.

It’s not easy going through everything that you’ve had to deal with so far and it’s normal to feel scared. Please don’t feel alone in this though - there are lots of people here in a similar situation.

Hope you have a better weekend and have lots of things to distract you from worrying - easier said than done!

Take care xx

Hi caz
My heart broke reading this and how scared you feel x
I really can’t offer any kind of medical reassurance or advice but I truly believe that having someone who you can talk about your fears, who isn’t too close to you, if only to get it off your chest, rant, rave, cry etc who will understand your feelings as they too are going through the same thing may help and I am more than happy to be this person any time you need.
I was also worried about spread as 2 of my nodes were affected and they were not going to scan, but my medical team told me that they felt there was no point in scanning as the cells can be so tiny they can’t be detected on a scan…so they scan me say I’m clear when I may not be! So there course of action is to treat it as if it may have spread by giving me chemo…this will mop up anything that may have spread! Scans can be done after if necessary…I appreciated their honesty, and it gave me faith in them which helped to make me less anxious.
It’s a positive thing that they are offering you chemo and a scan later down the line, cause chemo would be the treatment anyway if there were any stray cells I should imagine. It’s gonna be a worry till then I know but I think when you start chemo and experience some (although I hope not too many) side affects you will realise just how powerful these drugs are! I’m on day 9 of TAC and I’m wondering how I’m surviving let alone any stray cells!
If your starting chemo in February I strongly recommend the monthly thread on here and the Facebook group we’ve started. I myself have found it invaluable. A safe place, surrounded by people that offer great advice, understanding, don’t judge, and lots of emotional support.
I really do hope I have helped even if it’s in a small way as your post really did pull at my heart as it echoed how scared I felt at the beginning of this awful nightmare.
Marie x

Dear Caz,

I’m so sorry you’re feeling so scared and I really feel for you.  I can tell you that when I had my CT scan they also saw something on my liver which they were going to biopsy but then it was decided it was too small so in the end they did an ultrasound and decided it was a haemangioma (a collection of blood vessels).  When I was re-scanned after chemo, and it was still there and hadn’t changed - that was good and was only done for my piece of mind. 

I also know of people who’ve had things on their lungs which is usually scarring due to a previous infection.  CT scans pick up all kinds of things which aren’t cancer - honestly.  Also re whatever you can feel behind your ear - I did find that I found all kinds of things over my body which I wasn’t sure about because I’d never examined bits of my body so intimately or been so aware of bodily functions.  You sort of develop a heightened sense - which is not surprising.

Sending you some gentle hugs and I think once you start your treatment, you’ll feel a bit better about things.

Ruby xx

Thank you so very much for the replies. I feel I am a victim of my own worries as if I hadn’t paid for the scan I would be less worried than I now am!
I’ve been worried about everything since the beginning but the fear is currently taking over my life. I am struggling to function with the simplest of tasks. I plan to do something with the children, give myself a shake and go out. But when I am out I just have this huge lump in my throat and spend the whole time trying not to cry. When I get home I am just so worn out and sad with holding all the emotion in and I just sob.
I prayed for a clear scan. I would have just cracked on with the treatment, feeling like there was hope and a point to it all.
Sorry I’m so depressing. I usually am so strong but the thought of leaving these children is killing me.

Thank you Sylviah and Kevin. I’ve told the consultant how I feel but he just seems to think I am a bit hysterical and ask too many questions he doesn’t have the answers to.
Thank you for the link Kevin. Mine is grade 3 so I think it is unfortunately not fitting some of the characteristics but no lymph node involvement is positive. I am just so utterly terrified due to this bleep scan. My left ear keeps ringing and my neck is stiff. I have tried pain killers, hot water bottles etc but it comes back. Maybe I am imagining it but I really don’t think I am. I am driving myself completely insane.
Thank you again for the replies. I really appreciate it. Trying to drag myself out of this but really struggling to and have been like this for about 10 days.
We took the kids away for a few days last week but I even struggled with that. Wondering if it would be the last time I did it with them, feeling so so envious of other families. I sound like such an ungrateful person, I’m sorry. I really just don’t actually know how to stop feeling like this. If one more family member tells me to be positive I ll scream. I’m really trying I just don’t know how to be. Thank you again

hi caz

so sorry you are feelin like this i also have been struggling just had secound operaion to remove margin lymph nodes are also clear .My doctor perscribed me antidipressants only 10 ml called citalopram they take 3 weeks to kick in and have made me feel calmer.I have struggled in the last 10 years no to take anything after my son committed suicide but no wish i had had these then dont feel so low and paniky but nothing will take away what we are going through .Enjoy your children keep your memories they will help you through this .

Hi Lollymum and welcome to the BCC forums where I am sure you will find support and shared experiences from your fellow users

In addition, our helpliners are on hand with practical and emotional support during the week 9-5 and Saturdays 10-2 on 0808 800 6000 so please feel free to call to talk any concerns over

You may find the following support ideas and information on our ‘Just diagnosed’ pages helpful over the coming months :

Take care
Lucy BCC

Hi lollymum
I’m so sorry you have found yourself on here. The news is so scary and I really understand how scared and shocked you must be feeling.
I’m sorry if reading my post has worried you more, I’m not usually this negative I’m just struggling to cope at the moment.
Did they explain why it didn’t show up on the mammogram? You must have been expecting clear results after that :frowning: I was told by the consultant he was 95% certain my lumps were nothing so I too had a big shock when the biopsy result came back. Like you I immediately thought the worst. I seemed to pick up when I had my mastectomy as I felt like I was doing something but the waiting for chemo following those scan results has been hard. Hopefully when you start that it will help you see the way forward.
If your cancer is hormone positive it means they have more options available to treat it. For example if it responds to oestrogen then they can give you meds to block you producing it. So it is a positive. Sorry someone else may explain that better than me.
The ladies I have met on here are really lovely and as you can see from their posts are very supportive.
I went for my pre assessment at the chemotherapy unit today and the nurse there asked me to go to docs about my ear. The doc examined me and said she could see the left overs of a throat / ear infection which was causing my symptoms so please try not to worry. It may be worth going to the doctors if you still have concerns. It’s so hard not to worry about every lump bump and ache.
I am struggling very much to stay positive at the minute. I read a lady’s post yesterday though that made me think. She said worrying is like being on a rocking horse. It takes up a lot of your time and occupies your mind but gets you no where. I’ve tried really really hard to bear that in mind :slight_smile:
My doctor said today that sometimes it’s best to accept a day as a bad day but tomorrow may be better.
I understand your worries about your daughter. Our kids need us and we need someone to tell us we will always be there for them. I have found that the hardest part of all this. I just love them so much. My 16 yr old daughter has coped brilliantly on the surface but at times has crumbled. My 7 yr old son is very cuddly at the moment and my 2 year old daughter keeps telling me she loves me and keeps choosing the book ‘mummys lump’ to read. They just need time like us to get their heads around it. I’ve tried to be honest with the kids every step of the way so they know I am telling them the truth.
The waiting for results is awful isn’t it. I wanted a scan but then I didn’t want to know the results! Typical woman :slight_smile: I will have absolutely everything tightly crossed for you.
Do you know when your chemotherapy will start? I start mine next Wednesday but have already has a mastectomy. That was a lot less painless than I expected so please don’t worry about that part. Perhaps we can be chemo buddies to help each other along the way.
Please don’t hesitate to get in touch with me if you need an ear or a rant. Sending you a big hug, I ll be thinking about you.
Caroline xxx