Cancer Support Thread #81 Newbies welcome

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This is a kind and friendly place for those with cancer or those worried they have cancer (or who used to have cancer) to hang out.
Please introduce yourselves and chat away. No issues are too big or small here.
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Thanks peaceanddove Glad you got to be cancer free so quickly.

Good morning everyone,

I’ve posted on this thread for a year now but this is my 3rd username.

I have a diagnosis of Stage 1a MOC fo,lowing debunking surgery - no chemotherapy needed.

The day my situation started I had what could only be described as an emotional breakdown and as well as being looked after by my Gynaecologist I was also under the care of a psychiatrist who specialized in women’s health/trauma and what can happen to the mind when the body goes wrong. I’ve done really well to the extent that one month ago my medication was reduced by 10mgs and I felt great on my new dose.

At the end of May I had my first 6 month check up and I did well until I was in the ultrasound room where this nightmare began. I didn’t however jump off the bed and try to run away that time but I was shaking and sweating and feeling sick after the examination. My daughter was with me and it helped.

Life went on after that check up and apart from this OC thing everything else in life is normal.

I was supposed to have my second check up a week ago and I planned a holiday beforehand which I enjoyed, I saw my dad for the first time since Covid started, low and behold though I got home from my holiday a week before the appt and I then plunged into some bloody huge black hole that left me so terrified of the appt that I didn’t go. I just refused point blank because I was so scared and nothing anyone said would get me to change my mind.

All I could say to my family was that the thought of that ultrasound room terrified me and even when my dentist asked me to look at a gum X-ray recently I had a panic attack, just as I had one when an orthopedic Dr asked me to look at an X-ray of my shoulder. On both occasions I immediately thought I have cancer again! My lovely children have now said - we thought we could understand what you went through in that ultrasound room last year but we obviously didn’t .

Anyway, I was able to say to myself - learn from this and try to put together another appt so I decided to see my Dr privately and in a different hospital. I also decided to write down questions and never go anywhere near Dr Google Again. I also left the cancer forums I was on.

So today I’m seeing the dr and I was ok till a few hours ago when my appt was cancelled then reinstated for the same time and the two hours that it took for it to be sorted has taken my from being calm and thinking - I really think I can do this, to once again me being sick with nerves.

I’ve come to the conclusion this last week that I probably have some kind of PTSD and I’m seeing my psychiatrist on Saturday with a view to some kind of help for it. But what do I do today? People think that a 1a diagnosis is a lucky escape but it really isn’t when you have MOC and chemotherapy rarely works against it. I could quite honestly scream today I’m just so scared it’s come back.

@MrsWooster

Thanks, thereisonlyoneofme does that mean they can take out the whole omentum and we don’t sort of ‘cave in’..?! I can think of better ways of losing weight but I just want rid of everything.

In my experience what’s left inside does kind of jiggle around a bit more but that’s it really.

Sorry you are so anxious, try and get yourself to the appointment if you can, best to get checked.

I have May 2018 ct through 3 times now, nothing for a few days then 3 sources arrive at once and no expert but looks like good news, my scan in May 2018 showed left adrenal mass of 2.5cms, last scan was left and 3.3cms which is a benign growth rate. Got to do ct and have it confirmed and gp says will need referral but less urgent, she said it wont be mets and hopefully not cancer but saw a research paper were all growing at 0.3cms pa or less were benign and all over 0.6cms pa cancerous and mine is about 0.2pa. Phew. Just stage 3 breast cancer to deal with, probably a Christmas mastectomy coming my way, lucky me.

Re the Omentum I havent noticed that its gone ! I did think I would have lost a load of weight after two massive tumours evicted but Im back up to pre op weight now .
I never had a biopsy taken, they diagnosed me from the ascites fluid.
Mind you the hospital I was diagnosed at not exactly top of the range, glad when I was referred !

@MaHBroon Hi again - quick message - can you get some beta blockers just to get you through the scan(s)?

Hi All, new here, shitting bricks right now and could do with a hand hold. Found a lump a couple of weekends ago on my breast, had it checked last night with a mammogram, ultrasound and biopsies taken and was told at the end of my appointment that they thought it was cancer but couldn't tell me more until the biopsies are back. I have an appointment on Monday next week to go through the results and the plan to move ahead but I am shitting bricks. I'm expecting treatment and although that does scare me about how life will be affected, my biggest fear is leaving my kids. I know I'm running way ahead of myself, but trying to keep things steady and struggling right now.

I'm a little unsure how they (the nurse) can know it's cancer when the biopsy isn't back? Good news is there is only one lump and my lymph nodes appear clear.

Sorry to unload. Just really scared.

Silkie, Acinonyx2, thank you for your kind words. It’s much appreciated.

I surprised myself by being able to do the appt though I still have to have my blood test once my Gynae-oncologist is back at work in our government clinic in 4 weeks. She does actually only do the follow up of her benign patients privately as she prefers having all the back up her other patients may need in our main hospital. Anyhoo she had a good look at the obvious and also confirmed I do indeed now have a hernia just above my belly button. I’m also being referred to the urinary Gynae clinic back at the government hospital as my surgery definitely did make a problem I’d had for a wee while a whole lot worse. I was also able to go over my path report with her and was reassured by her positivity. She did admit though that MOC does pose its own set of problems regarding treatment If it comes back. So, if I can get to this time next year with a recurrence the chances of ever having one go down to 10 percent even if with having an infiltrative invasion and I then go down to yearly check ups.

My daughter in law was with me and she was really good, she told me just do what ever you can in there and if you need help I’ve got you. I was surprised to manage it on my own though and no, it wasn’t a walk in the park but I did it. So only a blood test left in a few weeks and the add said, there is little chance of it not being what we all want for you.

When I was dressing after my ultrasound I heard the Dr and my girl talking and she said, I’m overjoyed to see her today and all the more so because she’s talking to me - the last few times I saw her she would put her fingers in her ears and turn away 🙈😌

Thank God though she didn’t tell her about me jumping off a table mid way through an examination and trying to run out of the room with no pants on and my bum on show - she knows now though 😂

Am currently sitting in bed having had Fish Tacos for tea that my daughter cooked for us, dessert was a third street donut and two glasses of Prosecco.

Thank you.

@holdtightandenjoytheride

I’m really sorry you’ve found yourself in this situation. The fear is awful. Just bloody awful and I wouldn’t wish it on anyone.

holdtightandenjoytheride

I am so sorry you're going through this and especially just before Xmas. I was diagnosed with early breast cancer nearly 2 years ago. I was devastated, it was such a bolt from the blue. No lump, nothing. The fear floored me. But I promise it does fade and everything feels much more positive once you have your treatment plan in place.

It's horrible but it's a do-able sort of horrible, if that makes sense? Once treatment starts, just focus on that every appointment and every test is taking you one step further away from having cancer.

You will be absolutely fine.

Hi, Holdtight it’s genuinely a spiral at the start, isn’t it? I’m hoping knowledge is power and biopsy /results will be an opportunity for feet on the ground.

Welcome Handhold and sorry you have been told its cancer and yes its really scary when you have kids who are dependent on you.

I was also told at first one stop shop end its cancer and they were certain and could be any stage of 1 to 4 and come back in a week for treatment plan.

When you go back on Monday they say if the biopsies confirmed the cancer, mine did, and give you some leaflets, a cup of tea and tell you what the cancer type is and what grade it is (this is different to stage) and whether you are respond to hormones (to see how much hormone treatment like Tamoxifen will help) and your HER2 negative or positive (not sure exactly what that is but negative is don't respond well to chemo, positive is responds to chemo I think) and size of lump and if can see in lymph modes. I was then booked in for breast MRI to get better look and CT to check if gone to stage 4 as I had hip and rib pain, if yours is no lymph modes they probably won't do CT, I don't know how often they do MRI. I was told assuming CT clear next stage would be surgery then rest of treatment plan after that and either would be lumpectomy or mastectomy. Its was a whole new language and a whirlwind of information whilst I was alone in there but the nurses are kind and husband was waiting outside. I would get someone to go with you, mine was not allowed in but knowing there is someone close by helps.

Hopefully your has been caught early on and you get less treatment. The best way of coping I found is to try not to think about it, I watch trash TV, listen to music, think its not me this is happening to. Easier said than done.

I have lobular breast cancer and am just a bit ahead of you in the process, please feel free to PM me if you want to. I have 2 children as well one is autistic and he is not coping at school before this and other is going through gcse year. How old are your kids? No lymph modes improves your odds quite a bit so that is good and sounds like caught earlier on. I still don't have a treatment plan as my CT was not clear so we are working through that which took the terror to another level but I just found information today implying the other mass I have will be most likely benign though a doctor has to review it then I get a treatment plan end of next week. But if no CT you should have provisional treatment plan on Monday and at least then you can plan things round it. Take a pen and paper and think about what you want to know, they also give you numbers of the breast care nurses directly and you can phone them with questions. I am at Addenbrookes.

Thank you. It is reassuring to know others have felt the world slip from under you when trying to assimilate the news.

My kids are quite young - 8 and 11. I had planned to tell them very briefly that something was going on tonight, but they are so all over the place with end of term tiredness my gut instinct was not to. That's the thing - they can whip my boob off for all I care, I just need to be there for them. They're too young to be left and that fear takes my breath.

I'm hoping I'll feel braver on Monday. I feel grateful it's not a long wait and I am trying to feel positive and take one step at a time.
Silkieschickens - I'm Addenbrookes too. I'll DM you.

Aww that is so hard with younger kids. I have sent you a reply. There's a few of us at Addenbrookes.

@holdtightandenjoytheride

Thank you. It is reassuring to know others have felt the world slip from under you when trying to assimilate the news.

My kids are quite young - 8 and 11. I had planned to tell them very briefly that something was going on tonight, but they are so all over the place with end of term tiredness my gut instinct was not to. That's the thing - they can whip my boob off for all I care, I just need to be there for them. They're too young to be left and that fear takes my breath.

I'm hoping I'll feel braver on Monday. I feel grateful it's not a long wait and I am trying to feel positive and take one step at a time.
Silkieschickens - I'm Addenbrookes too. I'll DM you.

It’s unutterably shit, Holdtight. Mine are 8 and 11 too and trying to work out why best is so hard. Pretending nothing’s going on is no good, because they are little barometers, whereas telling all is paralysingly terrifying for me so absolutely unthinkable for them. Somewhere in the middle is the compromise but gods knows where.

Welcome to all that have joined us recently and I'm sorry you find yourselves here.
I would advise waiting until you have a treatment plan before telling your children, that way you can answer their questions about what is going to happen much more easily.

I'm off to the wound clinic this morning and then to see my menopause gynae for a catch up. The gynae department at my local hospital brings back awful memories of being diagnosed with my first cancer last year (if there was a how not to break it to someone that they have cancer guide, then they followed that to the letter) so I shall treat myself to lunch out afterwards.

I'm off to the wound clinic this morning and then to see my menopause gynae for a catch up. The gynae department at my local hospital brings back awful memories of being diagnosed with my first cancer last year (if there was a how not to break it to someone that they have cancer guide, then they followed that to the letter) so I shall treat myself to lunch out afterwards

I’m sorry to hear that you were given such awful news so badly. It really does set a person back at a time when they already don’t know whether they are coming or going.

Enjoy your lunch.

MrsPNut I can sympathise with the breaking of news thing. I was told in a crowded waiting room while waiting to go for a blood test that I had Grade IIIC ovarian cancer, by a clinical nurse! I was shellshocked,and had gone to the appointment on my own so could barely drive myself home.
My care was transferred to another Trust afterwards thankfully. I cannot bear having to go to the local hospital again for anything.

It’s awful that others have been traumatised to the extent they have trouble going back to where their journey started. I really did think it was just me and that I was a coward/bonkers/and a whole lot more besides. People would tell me everyone gets scared but it’s just the other day when I couldn’t face going for my check up and back to that ultrasound room that my darling daughter said to me - I really think that none of us have understood just what happened to you in that room that day even though we knew it had traumatised you.

Yes I can laugh now about jumping knickerless off the table and trying to escape, then telling the drs not to speak to each other because I didn’t want to hear what they were saying - and even telling them and don’t think you can speak in Arabic to each other because I speak Arabic as well. 🤣

And then of course when I’d had the surgery and I left hospital knowing I had to wait 2 weeks for my results so I could recover physically before I received them - to then be walking across the car park 10 mins later and receive a text for an appt with gynae oncology for two weeks later. So two weeks of knowing I had cancer yet not knowing anymore about it. No wonder It finished me off. It was a nightmare from start to finish - going for a check up and to organise a hysterectomy only to be told that I didn’t have lemon sized fibroids - that I also had a 6kg water melon sized ovarian cyst that had been missed a week earlier by someone else.

Anyway, really helped me seeing my gynae oncologist in a different setting yesterday and having the chat that we should have had 10 months ago if I’d been well enough mentally and I’m going to try and give the room where everything started another go next month when I go for some blood tests. If I can’t though I’ll sort something else out because I really can’t/won’t go on like this.

I’m sorry we all go through so much terror.

Just been referred onto the two week wait for a lump and an indentation. Totally terrified. I can get a private appt for the beginning of next week but that is only a consultant and a scan, any biopsies needed would be at another date. Nhs is one stop shop but probably longer wait. Which should I do? Young family etc

Should add that GP said she wasn't worried but I am totally panicked

Hi @Happydaysandhappysmiles I would get the private appointment and get the scans done. They can usually tell if what they’re looking at on ultrasound is cancer or benign. At least then you know. Plus try and hold onto the fact that your GP is not worried
I’m so sorry you’re going through such worry. Most lumps do turn out to be benign
Sending you good vibes

Thank you, it is going to be a long three days...kicking myself for not going sooner but just thought it was post breastfeeding changes or just a trick of my vision/angle I was looking (and hadn't found a lump myself)

@Happydaysandhappysmiles

I’m sorry you’re in this situation.

I’ve no idea what I’d do now but when I started my OC experience I didn’t want my results of scans, mammograms and blood tests in dribs and drabs so I told my family that I wanted the results all at once. I don’t know if it was the best thing for me as some of the results would have given me some peace and I know it was very difficult for my adult children to see me becoming mentally unwell when they had information that was on my side. I was adamant though that I wanted results all at once so they went with what I wanted.

My only thoughts on your situation is that what with Christmas being only two weeks away just what does a two week pathway mean in real terms? could it end up being longer and could seeing someone privately even to start the process off give you some peace or how would you cope if the consultant said - I don’t want to say anymore until you’ve had a biopsy as I’m not sure.

I really don’t know what I do but I hope you can come to a decision that helps you somehow.

Thank you, unless I am wrong, hopefully if I have the private appt on Monday then any biopsies required could be fitted in before Christmas. The nhs appt will not be before Monday I am sure but in theory would be a one stop shop. Given that the Monday appt could give me peace of mind though, I think that might be best. As the ANP 'isn't worried' hopefully the consultant will just be able to reassure me. I am very anxious though so am going to find the next few days hard. The hours since my appt this morning have been tough enough! Any tips to help me through this are much appreciated. Just totally preoccupying me.