Cancer support thread #73 - come in, we're here for you.

[Trumpton]

Welcome to the new support thread for anyone who has cancer, at whatever stage of treatment, is worried about symptoms, or is waiting for tests or results.

This is the place to worry, moan, ask questions, share experiences and good and bad news, and celebrate milestones!

If you've got a loved one with cancer then your best place for support is probably on the Life-Limiting Illness board.

Our previous thread is HERE

Current members, please do introduce yourselves smile

Opticians say they won't get a report?
All very odd.

Not sure if it's ok for me to post, but I'm scared to death and could do with any answers of people with similar experiences.

I'm 36 and beginning of December I found a pea size lump in my left breast. I wen straight to the doctor who referred me, but was sure it's just tissue. I had my appointment at the hospital on December 17th where I had been examined them send for an ultrasound, a mammogram and a biopsy. The doctor said it wasn't a cyst, but couldn't confirm anything to me. She seemed to think that little lump has been there a year.

Since the biopsy the lump is bigger and still very sore. I got called last week to come in for another mammogram as they said they need to look at it from a different angle.

I've received in the post a copy of what's been sent to my GP. Saying there is a lump and my asa class will be II and who performance is zero? I don't know what this means?

My right breast is normal with axilla. In the left, there was a discrete mass 20 x 15 Mum suspicions mass. Which has been biopsies to complete triple assessment. The letter also states they intend to review me in the multidisciplinary meeting? What does this even mean?

Today I had the second mammogram and again they couldn't tell me anything. Not even if there was anything on the mammogram or even the previous one. I'm literally terrified and thinking the absolute worst. I've now got another few weeks wait to find out. Pleas can anyone help? I've no one in RL to talk to and I'd rather know what's going to be in store for me so I can at least process it.

Thank you.

Hi,
I'm sure someone with experience will be along shortly but I'm sorry that the drs aren't keeping you more in the loop
X

@Nonotmenori I had ovarian cancer, so I can't explain anything about breast lumps, but the "review in multidisciplinary meeting" just means that the results of all the tests you have had will be discussed by a number of people at their next weekly meeting - I imagine a consultant oncologist with junior doctors, nurse specialists, possibly the person/people who performed the biopsies, whoever looks at the mammograms. Then they will contact you to say what the next step will be. It sounds like you will need further investigations or maybe treatment, I'm very sorry you're having to go through this.

Thank you that's kind of what I've been thinking is going to happen. Feel like my whole world is going to crash around me any minute now. Just got to wait fir this dreaded phone call.

Hello everyone, well as lovely as everyone is I was hoping to not be hanging around. But hang around I will. They have confirmed breast cancer tonight and the oncology team are going to make a plan and then I will know next steps. Hope you don't mind me being around a while longer. Kind of numb at the moment, sure it will hit me soon xxx

hippie
Oh, love. I just don't know what to say xxxx

@Hippiechick162 I am sorry to hear that. Numb is the normal feeling now. The worst is confirmed. You will very quickly get a treatment plan and when I was in your position that helped me to cope. There are lots of different breast cancers and lots of details they will now look at before an MDT decide on the plan. Lots of us on here with BC so hopefully whatever you find out someone will have experience. There are a couple of big things that will affect the treatment - is it oestrogen positive or HER2 positive. You may or may not need chemotherapy. Surgery of some kind almost definitely, possibly radiotherapy. If you want to google I recommend that for now, you stick to Breastcancernow.

I'm sure lots of great advice will be coming your way shortly from the wonderful posters on this thread but until then I'm sending you lots of love ❤

Hippiechick162 - so sorry it's bad news. Hope you are getting plenty of RL support and you don't have to wait too long for your treatment plan.

Hippie, I'm sorry to hear this xx

Nonotmenori Are you in the UK /NHS? Did you go to a dedicated breast clinic? I can understand how worried you are, the report clearly says you have a 20mm suspicious mass. However the biopsy is the only thing which will confirm whether or not it is cancer. and it won't take weeks. Do you have another breast clinic appointment? My experience of the breast clinic was that after the monogram /ultrasound the consultant told me she thought it was likely cancer. I had to go back ten days (not weeks)later for the biopsy result. If it's suspected cancer everything moves very fast. Also the biopsy is painful and my breast hurt much more after the biopsy, I also thought the lump had grown but it had not, it was swelling from the biopsy.
If you were seen at a breast clinic I would ring them and askwhen you will see the consultant again.

Also @Hippiechick162 you will be allocated a Breast Care Nurse. These are a wonderful source of support and advice.

@Skap Yes I'm in SE London. I went to the hospital clinic that the referred me to. The biopsy, ultrasound and mammogram were done in the first appointment. That was Dec 17th. I was called last week and asked to come in for another mammogram today. They wouldn't tell me anything either appointments. I practically begged them for anything, but they couldn't tell me. I've been to,d today they will contact me within two weeks. The lad doing the mammogram said she's not been following my case so can't tell me anything.

I would have thought they'd give me some idea for any of the results, but no.

Hi @Skap thank you the breast care nurse is calling me tomorrow.

Thanks @CointreauVersial yeah have lots of RL support but also wanted people who knew what I was going through to talk to

Thanks @Stinkyeddie hope you get your answers soon xxx

@Hippiechick162 sorry to hear your news, I think all of us value the support we get on this thread, no matter how much we have IRL. Being able to moan, fret, complain about people's insensitive comments, etc., without having to worry about the impact on the "listener" is so useful. And of course the wealth of experience here.
A lot of us would say that it is easier once we have a diagnosis, even if it's worse than we'd hoped for.
I imagine us all with our arms linked, helping each other to keep standing in a strong wind.

I'm feeling cross atm about the way letters are sent from hospital to GP, and copied to patients, containing information that it's very likely none of the recipients will understand. I got one a couple of weeks ago, following my last appointment with a junior doctor on the oncology team, which has a line under "diagnosis" with a string of letters and numbers which I understand to be about gene mutations in the tumour. But whether it means none of the genes had mutated, or one or more had, I have no idea. I rang an ovarian cancer charity helpline, they advised me to ask my GP; had a telephone appointment with the practice last night and predictably the doctor I spoke to didn't understand any more than I did. She suggested contacting my CNS, who was as easy to get hold of as the Queen. I will probably just wait until the next hospital appointment in March.

@Hippiechick162 I’m so sorry you god bad news and you have to hang around

Hippiechick. I am so sorry that the news was not what you wanted to hear. As others have said it does get a bit easier when you have a clear treatment plan although even then it can all feel a bit unreal for a while.

Nonotmenori and Bridget I share your upset at the incomprehensible letters. I have been very lucky in that the chemo unit nurses have been excellent in making sure that I did understand what I was being told and what the implications were but the doctors do tend to write to each other in an incomprehensible code. If the GP's don't even understand it what on earth is the point. Having to wait weeks for an explanation about something that concerns you more than anyone else is really not acceptable and just adds stress. If they are going to copy us in to the letters the least they could do would be to add a paragraph in plain english or at least a glossary of terms etc. The advice is always to avoid Google and I agree with that but it is not surprising that people resort to that to decode the gobbledegook. I hope you both get answers very soon.

@Bloodybridget I imagine us all with our arms linked, helping each other to keep standing in a strong wind
Bloody hell bridget that made me cry. That should be in the thread title.

I love that chain of events over the letter. My CNSs have been far less accessible than breast care nurse. Unfortunately for the duration of chemotherapy the breast care nurse is temporarily suspended. My BCN asked me to let her know when I'd had my last chemo which I did by email. I got a lovely long reply from her which made me feel like a human being again instead of a malingering nuisance (CNS). My solution to those letters is to google. Type in Breast cancer followed by the unintelligible phrase or list of numbers and 99% of the time I find the answer. Just be careful what you wish for as I typed in my prognosis. It had never been discussed with me but was in the GP letter. It wasn't quite what I hoped to find.

Has anyone got any experience of brachytherapy? I'm due to start external radiotherapy for 5 weeks followed by 4 sessions of internal radiotherapy. I'm a bit worried about the bracytherapy how it's carried out and the side effects. I've got cancer of the vagina.

meercat and Skap thanks for the sympathy - I did Google of course putting in everything I could think of to get useful results, but it was hopeless, in fact the GP I spoke to said she wouldn't even look online herself as it would be too confusing.
CaptainNancy I don't have any experience of brachytherapy, just wanted to say hello and welcome, I'm sure someone will come along soon who is more help. Was your diagnosis recent, or have you already had some treatment?

Hi @CaptainNancy1 I'm pretty sure @redspook had brachytherapy and someone else but my memory and spreadsheet fail me. I'm sure they will be along soon. Lots have had radiotherapy though.

Hi @CaptainNancy1, and welcome. I'll budge up and you can sit down next to me, as I have had brachytherapy.
What type of treatment are you having, as they are different? Mine was high dose over two hospital stays, with the rods being left in place for 24 hours. I understand that the other type of treatment involves the rods being there for a much shorter time.
Budging up further to make room for Hippiechick also. Keep posting as you are processing your thoughts; it really helps.
Re the letters, I am still waiting for a letter with the results of scans done on 4th December. I rang the consultant before Christmas and he told me over the phone, as the stress of waiting was getting to me. No doubt I won't understand all of the letter when it eventually arrives.

redspook and Skap Thanks for making me welcome. Not sure yet how the brachytherapy will be carried out. I originally had cervical cancer and had it treated by laser but the hospital found I also had vaginal cancer. I've surgery to remove the infected part and had radiotherapy external & internal planned to make sure no malignant cells were left behind. When I had my planning scan it highlighted an enlarged uterus so I've ended up having a radical hysterectomy which I'm still recovering from.

Originally I was having 5 weeks of daily external radiotherapy and 4 sessions of brachytherapy tagged on the end (2 sessions a week). I don't know how the internal radiotherapy will be carried out.
I'm worried that by week 5 I might be quite sore and fragile and I'm a bit anxious at the thought of having quite invasive treatment.

Hi everybody, a while since I checked in here as been waiting to hear since my biopsy and plans ahead but here goes another moan!
So tumour in the airway is a carcinoid, they're thinking likely no spread to lymph nodes from the look of it but I'll have some sort of radioactive scan thing to check further. Then plan is for surgery to probably remove two lower lobes of left lung I think, with a week's hospital stay away from my wee dudes (have to travel 3 hours away again) :(
Had a chest infection again at Christmas due to dodgy lung so another round of antibiotics to clear that. It's gone but still coughing. Have had to tell my mum now as she's been visiting and I don't really like her knowing as she wants all the details and I'd rather just mull it over by myself.
So all rosy over here!

Hi is anyone living with stage 4 or incurable but treatable cancer? I have stage 4 bc and feel a bit alone.