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Not what I wanted to hear

16 REPLIES 16
Carole M
Member

Re: Not what I wanted to hear

Thank you Annie for your story. I'm relieved that you had half your nodes affected but nothing beyond that.
And thanks Argymargy.
It looks like there is hope . I'm just so worried the cancer has been creeping around my body without my knowledge. I've had so many health problems the last few years that I don't run to the GP with every ache and pain and now of course I think I should have done.
My BC was picked up by routine mammo check.
Argymargy
Member

Re: Not what I wanted to hear

Yes, my CT scan was clear. xx

Mai7
Community Champion

Re: Not what I wanted to hear

Carole, I thought either auto-correct or some regional saying!

Anniej
Community Champion

Re: Not what I wanted to hear

Hi Carole, I understand your anxiety. I was so pleased to hear that the tumour had been removed with clear margins, which meant it hadn't spread. The lymph nodes are your knights in shining armour and stop it spreading, so there's no guarantee but I had 7/15 with positive signs. My consultant was very positive that as ONLY half were affected I was clear . Whew!!! However, to double check I had to have a CT scan, which was also clear. This then meant the Onvology team could go ahead with a tailored treatment plan. I have trusted my medical team completely as they only want positive outcomes, as does yours. The waiting is the worst thing, Carole, but hang in there, and DO NOT Google. You will make yourself more anxious. Come on here, or the Macmillan site,  and ask questions. X

Carole M
Member

Re: Not what I wanted to hear

"Good " Mai. Flaming auto correct.
Carole M
Member

Re: Not what I wanted to hear

That's going Mai
Mai7
Community Champion

Re: Not what I wanted to hear

Carole, my CT scan was clear, thankfully.

Carole M
Member

Re: Not what I wanted to hear

So Mai and Argymargy were you clear on CT scans?
Argymargy
Member

Re: Not what I wanted to hear

Hey Carole.  I'm so sorry, I know how tough this is - definitely not what you wanted to hear.  I've been down this road, as have many others on this forum, and we all pick ourselves up, dust ourselves down and throw back our shoulders to meet the next challenge.  I have no doubt you will be fine as you have the right attitude.  There are positives if you squint your eyes and look hard enough!  I've even found positives about being hairless - like others say there is no bad hair day, no shaving, no plucking, no waxing, no clogged bath plugs, no hours spent blowdrying and straightening.  Getting ready to go out takes very little time!!

 

I had a CT scan to check other major organs for any spread; I think this is standard and should happen soon.

 

Please don't frighten yourself with the internet.  I've found horror stories everywhere but personally I've had nothing awful happen.  The chemotherapy is tolerable, my team are great, I am positive about the future.

 

My one piece of advice would be to ensure you have physio input, do your exercises religiously and if you are not happy at any stage, put yourself first and ask for/demand help. xxx

Mai7
Community Champion

Re: Not what I wanted to hear

Hi Carole, I think faith in your medical team to continue doing the right thing for your situation is good and maybe give them a call for support and to talk you through what's happening if you have any concerns. As I had node involvement and a large tumour at initial diagnosis I was given a torso CT scan to check for spread. Waiting for the results was a very anxious time. I've done quite a bit of reading but I'm not sure if it's helped or not. It's given me a factual understanding about cancer and how it spreads but it doesn't predict my own future. Just because cancer cells are in the nodes it doesn't mean they have spread to form a new tumour elsewhere but they have to be zapped to stop them from progressing further. Hope this helps. X

Carole M
Member

Re: Not what I wanted to hear

Thank you ladies for your helpful replies. When the nodes are cancerous what are the chances that the cancer has spread further. This is my main worry and how do you find out. Is it a CT scan or what? If it's only gone to a few nodes does that mean it won't have affected anywhere else, I'm scared to look into this on the internet and wondered how you are all doing cancer wise? I haven't looked ahead at the passage of this and not sure I want to.
Anniej
Community Champion

Re: Not what I wanted to hear

Hi Carole, sending you a big hug as you certainly need it at the moment. No, it isn't a good place to be, but by far the best that everything has been discovered now. Your medical team are team Carole, and they will nurture you until you pass the finishing line. I've had full node excision as the biopsies showed 2/3 were cancerous. I'm so very pleased that decision was made as half of the nodes removed were the same. It is a scary time, but BC is so very treatable now it really is the best one to have. I'm 70, WLE with full excision and day 11 of first chemo. The chemo was not unpleasant, I sat and chatted to other women, some were knitting! I'm now in my downward spiral, so waiting for some side effects.....so far so good. I have a lovely wig which I fully intend to keep wearing after my hair comes back, it looks as though I've just come from the hairdressers😍 and I won't ever have another bad hair day! We on the forum do know exactly where you are coming from, so sending you strength, and the big girl knickers we pass around on our worst days. X

Mai7
Community Champion

Re: Not what I wanted to hear

Hi Carole M, If you can try and think of it as: the tumour is gone but the mopping up of free floaters needs to be completed then you can just take another step forward.  Try not to be hard on yourself and just give yourself time to absorb the new information. It's ok to be weak sometimes but don't unpack and stay there. I have a fantastic wig and some really nice hipster hats to pop over a skull cap, by the way, as I didn't fancy the prospect of faffing with those chemo scarves.  I cold capped so haven't lost any hair yet and it's day 17!

Carole M
Member

Re: Not what I wanted to hear

Thank you Mai. I'm just feeling weepy today and don't feel like me any more. Losing my hair will just complete the picture. I would be ok if I knew the cancer had gone but I don't yet. Running out of positivity.
Ilovemarsbars
Member

Re: Not what I wanted to hear

Hey Carole.
Sorry to hear your having a rough time. I have my left mx with immediate temporary reconstruction on 27th April. I'm 34 And up until this point had been told my nodes were clear. I woke from surgery with two drains meaning I had full clearance because the one they took tested positive for cancer. I was so sad.
The numbness and sensations dochange a lot and please don't expect to much to soon. Even now two weeks on I'm still suffering with nerve pain in my arm and some numbness but t does get better.

I had my results Thursday and of the ten nodes removed only one had cancer so was the best I could hope for. I'll need chemo to and that scares me but you know what...... it's keeping me alive and I'm going to get better so have to do what they say and trust the doctor.

Try not to worry to much and don't be to hard on yourself. This forum is great for reassurance and an ear. Don't be a stranger. Xx
Mai7
Community Champion

Re: Not what I wanted to hear

Hi Carole M, sorry to hear it's all getting you down after everything you've already been through. I just want to let you know that that had my first of eight rounds of chemo on 27th April and it's been much easier than I expected. You just have to keep yourself really healthy (natural food and drinks) and look after your skin and bodily entrance and exit points!. I'm 48 and was diagnosed with stage 2 locally advanced invasive BC including local nodes at the end of March. The chemo is to clear the nodes, tidy up the diffuse tumour margins and shrink it before surgery. Try not to worry about the chemo as its all very manageable and when you know your start date join the "going through treatment>chemotherapy monthly threads" on this forum for the month you start and you'll form a lovely supportive group with those going through chemo at the same time. Your medical team are doing this to prevent reoccurrence so try and stay positive about the next bit of your obstacle course and read up on self care during chemo. You might want to have a look at our May starters thread to see how we are coping! Take care and sending you a big hug. X

Carole M
Member

Not what I wanted to hear

Well I had my long awaited mx with reconstruction expanding implant on Friday 12 May. The news was not good. They had thought the LNs were clear but took two SLNs during op for testing and both wiere cancer positive so I've had axillary clearance. Have to wait two weeks for path results to find out the rest. Is there never any good news with this process? Been told I almost certainly need chemo now and that also scares me.
Woke up with a numb and tingling hand but that recovered after a night and now I just feel very sore and depressed. Should go home tomorrow.
Someone tell me something positive please.