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Hi Gill
Firstly, I would like to welcome you to the discussion forums, they are a friendly, supportive and informative place to be and I’m sure you’ll receive lots of replies from our many members.
I understand this is a very anxious time for you and the delays whilst away can’t have helped with your worries.
If you feel it would help to talk about how you are feeling or just get some support about the treatments, etc, please feel free to call the helpline, they’re great listeners too. The number is 0808 800 6000, they’re open today until 2pm then Monday to Friday 9.00 am until 5.00 pm.
I also thought you might be interested in our Resource Pack, it is essential for anyone with a primary diagnosis of breast cancer. Filled with information to help you better understand your diagnosis, test results and the various treatments available.
Here’s the link if you’d like to order one through the site:
://www.breastcancercare.org.uk/healthcare-professionals/publications/a-diagnosis-of-breast-cancer/*/changeTemplate/PublicationDisplay/publicationId/82/
Best wishes
Louise
Facilitator
Hi Gill
Sorry to see you have had to join the club, but now you are here you’ll find some new and lovely friends. It must have been awful being stranded like that; I reckon that was even worse than waiting for results, which in my experience is the worst, worse than the op or the treatment. Good luck now you are back, and I do hope you won’t have to wait too long.
Love Maria
Gill - so sorry that you have had to join us all on here - but welcome… I think we all remember the shock of diagnosis… I’ve had close family members have cancer - but nothing prepares you for the feeling when it is you sitting there in that chair…
You really will find amazing support on here and there is always someone who will know the answer to your questions - and do remember the helpline who can also help so much…
One thing we always tell the new members is try not to look too far ahead on the site - there are many treatments and scenarios which might well never apply to you so try and take each step at a time.
Take care and I hope they are soon able to get all your scans etc done and that they have good results…
Theresa x
Hi Gill
I’m so sorry you’ve found yourself here, and have had such a worrying delay. I think this is the hardest time waiting for everything to start - most of us started to feel better when treatment was under way - you tend to then focus on what is directly in front of you. If some of your lymph nodes are infected you will almost certainly have chemo - you will find the ladies here will help you through it and there will always be someone to answer your questions, and commiserate. I know it is hard not to think the worst when you go for scans, but it is very common to have some lymph nodes infected but no further spread - my onc told me only 5% of cases of bc present at dx with spread beyond lymph nodes.
Good luck - let us know how you get on.
finty x
Hi Gill
‘welcome’ You must have been going mad, waiting to get back from your ‘break’ Couldn’t have made it up could you? You get to the point of thinking ‘will anything go right’
Well hopefully it will start now…it is all the waiting for ops and results that will drive you mad…But once things start moving, you will start to ‘relax’ a little.
Not sure when your appointments are, but keep us informed, this is a truly brilliant forum, and you will get lots and lots of support.
Good Luck
Hi Maria, Hope you are feeling ok, you have been quiet? or have l just missed your posts?
Finty, like the % your onc mentions, any positive news is good news!
would like it to be zero!!!
Sandra xxx
Hi Gill
Glad youre back and able to reschedule the appointments.You will still be in shock and I suppose its all part of the many experiences through the ‘journey’
The important thing is that youve got the process started and Im sure youre in good hands.
The advice not to look too far ahead is so right-we are all different, as is our treatment. When I was diagnosed I assumed Id have chemo/rads, but I ended up with surgery only, followed by tamoxifen, so I understand how difficult it is when you are faced with all this.I found writing questions down before appts, and taking someone with you to write down answers will help too.
With your family for support, you will manage this, so best wishes for the next step.
Cathie
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Hi Gill,
I have just read your post & can totally understand how you must be feeling. I found my lump in February & here we are about to enter May and I am still waiting or my operation. This waiting is the hardest thing I have ever had to deal with. I am convinced I can feel the cancer spreading. I feel tingling in my affected breast and am worrying myself silly thining that it is invading my body with every passing second. What is taking so long?? Does anyone know what the N.I.C.E guidelines are about how long we should wait for an operation?
Fingers crossed for you
Gill x
I was told the operation had to be done within 31 days. mine was 35 days, l was diagnosed on the 9th Feb, after two lumpectomies, l am now awaiting mx!
I think the 31 days starts from the diagnosis and not from when you found the lump. when l questioned why mine had gone over the 31 days, l was told it was because they were waiting for the biopsy result on my lymphnodes.
So lf you have had the results over 31 days l would question why the wait!
Sandra x
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Hi to All of you - I was diagnosed 23rd March, and had my mx/ nodal clearance last week. Just wanted to say keep going, as the diagnostic run of tests/ pace of it leaves you little time for feelings and I found that the hardest part so far. Once those are done and you know more what you’re facing it does seem to get a bit easier. If anyone wants to know anything about the operation side, ask and I’ll try and help. I’m feeling pretty good though and it’s not yet one week since my operation. Hope that might make some of you feel a bit more cheerful! Julie x
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Gill - that is great news that the bone scan is fine…
Fingers crossed that the ct and mri are fine too… Hope that all goes well on Tuesday and that you are soon home…
Take care
Theresa x
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Gill - that’s great news on the scan -I do so remember the relief! Front opening pyjamas are essential, so go buy. As to hospital hints, well we’re all so different and how you react to anaesthesia plays a large part. If you’re prone to being sick tell them - I am and they did a brilliant job and pretty much stopped it, which was impressive as last time I had an op I threw up for 24 hours.
If you’re having nodal clearance it’s more uncomfortable than a straight lumpectomy/ mastectomy because they have to cut some of the nerves. But it is strangely not too bad - more uncomfortably numb for me than outright pain so long as I’m careful that is! It’s sort of like that feeling you get at the Dentists when the inject you.
The biggest nuisance is the drains. I had two: one for breast, one for nodes. The node one is still with me, though should be out on Sunday. In my case am still losing a fair amount of fluid, so am anaemic which is bringing me down. I wish someone had told me to try and up my iron levels before the op as I wouldn’t feel so lacklustre now am sure. So go munch Spinach!
Also, take a shoulder bag in with you for the drain bottles - makes it far easier to carry them and they’re pretty yukky as they’re clear. The drains come out with lots of tubing that reaches easily to waist level and beyond, so a small bag that hangs from the good shoulder across and opens near your waist is perfect. The hospital offered me a Tesco’s carrier bag, so I had to get my other half to bring something from home…!
The biggest thing for me I think was that I hadn’t thought past the operation, so I crashed a bit when I came home. Am guessing it’s because it’s so tangible. Just the fact of having had an operation is no small thing and there’s no point denying that losing a breast or even part of one is emotional as well as physical. I’m sure I’m not unique, and am glad it’s gone in many ways, as hopefully it means the cancer has too. Still I’d bet it hits everyone, so be prepared to feel a bit wobbly.
Only other thing I hadn’t realised is it’s uncomfortable to sleep. You can only sleep on your back, and most women find they need to be propped up. I have a back problem too, so that’s made sleep even harder to find. I’m slowly finding it more comfortable, but it does take a while.
Not sure what else. I’ve been genuinely amazed by the empathy and brilliance of the care. I know not everyone’s so lucky, but the nurses and doctors were fantastic while I was in hospital (only 2 nights). I’ve been mobile and able to appear relatively normal since pretty much straight away too. My op was a week ago today and I just picked my son up from school and we went to the park for an ice cream, I’ll cook him tea, run a bath, etc. That’s just my experience and I am very tired and still sore, but it’s honestly surprised me how well and active I feel.
Hope that helps. Let me know if you want to know anything else. Really good luck with it all. Horrible to have to go through it, but at least once you’re through it’s another hurdle down xj
Gil-Just read this thread, & I can so identify with your account of the visit to clinic. I bounced in there on a beautiful summers day last year with my little lump, which I KNEW was nothing serious, expecting the nice man to laugh a bit at my boil/pimple right beside my nipple, & send me home. Instead he sent me for ultrasound, & when the nice lady started sticking needles under my arm I just knew that wasn’t good, as the lump was nowhere near there. Then I had a scoop test, & I have to say having local anaesthetic put in my boob was the worst thing I’d ever had up till that point. Anyway, got results 2 wks later (would have been 1 but I had booked a few days away) & had op 9 days later. Surgeon thought at this point I might just have rads, but no, when results came back, had to have chemo, then rads, & now on Herceptin for a year & Arimidex for however long. Well, chemo was the worst thing I’d ever had, but here I am now, chemo done, rads done, well into Herceptin, growing hair & back at work, although not yet full time.
It’s horrible Gill, I won’t lie, & it’s definitely a roller coaster, up 1 day, & the next, if crying was an olympic sport you’d be able to represent your country BUT you will get there, & funnily enough the memory fades, bit like childbirth. Must be a coping mechanism that we have built in. You will get great support on here & you can ask anything, about any symptom or bodily function you care to mention. I would agree though, watch what you read - personally I never read anything that I think might worry me even a little bit.
Good luck with everything. Remember, 1 day at a time, (& sometimes 1 hour at a time)
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Gill - so glad the mri and bone scan have been clear… hope all goes well with the op and you are home soon… i’ve now had 2 mastectomies a year apart… and in a way it is a case of one second you are in the prep room and the next thing you know you are in the recovery room… {{{hugs}}}
take care
Theresa x