Hi there,
I was told 2 weeks ago I had bc. Prediagnosis I waited a week to see GP then waited 11 weeks for my refer appointment at the breast clinic, I was having a black sticky discharge fom left nipple but as I have had cysts before the GP was not that concerned it was anything to worry about.
At apointment at breast clinic i had mammogram which showed nothing (dense tissue and age 46) then ultra sound and they took 8 core biopsies from 3 areas. I was told that day one of the areas was cancer.
Week later biopsy confirmed mass was cancer and also a cyst with pre cancer cells in. And one benign lump.
Now waiting another 2 weeks for MRI then probably an other week till results of that. Then they tell me it could be an other 3 weeks after mri results till surgery. I am sick with worry and panic, is this normal times to wait till treatment starts? I know they have to gather as much info as they can before a treatment plan is made, but it seems to be so slow.
Any advice on waiting times would be great.
Thanks.
Hi,
I am sorry that you are having to wait so long for results to come in. This is the worst time of it all.
I found my lump at Easter on good Friday. I then waited till the Monday to see my doctor. She referred me to the hospital and my appointment was 2 weeks later. I had an ultrasound and a biopsy. My diagnosis was made on the 21St April. On the 22nd I had a core biopsy where they took 11 samples of tissue. I had my surgery on Wednesday this week, a lumpectomy and a sentinel node biopsy. All in all quite a quick turnover of appointments and tests.
I don’t understand why they have waited 11 weeks before seeing you. Especially with the symptoms you are having. Maybe contact your bc nurse and ask for advice.
Good luck to you
Sonya xx
Gosh Vintage you did wait a long time for referral. I think the GP must have given you a non urgent referral, rather than the urgent one they are required to turn around within 2 weeks. Most unfortunate, but it is what it is now, so no point worrying about it. I’m sure you have plenty of other stuff running through your mind right now!! I know I kept waking up in the night with my mind spinning. The wait times after you had your hospital appt look pretty standard. Some are a bit faster or a bit slower. I did read somewhere that, although you just want it out ASAP, a few weeks either way doesn’t make much difference in the overall scheme of things. Have they said whether it’s DCIS or invasive? Good luck with everything. I promise you will feel less stressed once treatment starts. You are in one of the worst bits right now, but it WILL get better. Take care of yourself & all the best for your MRI/surgery. xx
Hi
Thanks for your replies and info ladies. I am up the wall with worry, such a shock the waiting and the unknown is hell, as I am sure you all know so well.
I have been told so far it’s an invasive cancer and showing hormone receptors. Other tests on biopsies not in as yet. They think it’s small but ultrasound was not very clear. And not sure if in other areas hence the MRI.
It’s been an awful year for me and my family. Last time I was in that hospital was with my mum 11 months ago, sadly she passed away after a major brain hemorrhage, she also had dementia and I was her carer, working full time with 2 teenage children. My father in law also passed away 5 weeks ago. I feel bad for my children and husband that I am causing more pain and worry to them.
I called the bc nurse today and she said she would ask the consultant if a provisional date for surgery could be booked, but this would be difficult because they don’t know yet what time slot would be required.
So I am really going to have to wait and see. Taking deep breaths.
Hi Vintage,
So sorry to hear of your diagnosis and the time it took to find out. There are national guidelines within the NHS regarding Cancer. Off the top of my head it is 2 weeks from referral by GP to Breast Clinic and 31 days for any treatment to start after diagnosis? You could try googling it.
I was a few days over on both but it a few weeks shouldn’t make any difference re: your cancer getting worse, so I was told by the Breast Surgeon as my surgery for Lumpectomy/SNB was delayed by a week,
I really hope things start moving along quickly for you now as you have been left waiting for an awful long time.
Best Wishes.
H. x
Hi Vintage, it’s so wrong that you were made to wait 11 weeks to be seen but that and the waiting now will have no real effect on the outcome just on your poor nerves! It is quite normal now for it to take a few weeks to gain all the information they need to make a full diagnosis and work out your treatment plan, I had my op two weeks after biopsy results and started treatment 6 weeks later. Just try and focus on one step at a time, it’s an old cliche but it’s seems to be the best way to deal with this other wise it’s just to overwhelming, things will get easier the more information you get Xx Jo
Hi Vintage, my understanding is that you should have been seen within 2 weeks of referral, but as the other ladies have said this wouldn’t make much difference to the outcome. I also have dense breast tissue (I’m 49) and had a clear mammogram a year ago and also another clear one this time, it was the ultrasound that confirmed the mass after I felt a lump. So after diagnosis on 11th Feb, MRI 24th Feb, lumpectomy 1st March, re-excision 15th March, starting Tamoxifen 11th April and 1st radiotherapy session yesterday (3 months after diagnosis), I actually feel like I am on the road to recovery. I found the waiting for results incredibly hard and was very up and down emotionally throughout, I didn’t know I could cry so much at the drop of a hat! It may not seem like it at the moment, but you will start to feel more in control and you will no doubt amaze yourself at how incredibly strong you are. I crumbled when I heard the words “it is breast cancer” and thought I would never feel “normal” again, but things have been back to pretty normal for a while now, I have been back at work for a few weeks, leaving early for my radiotherapy, the kids do all their activities as usual etc. The first few weeks were hard but it does get easier, I promise you! Take care Vintage and I wish you all the best xxx
Thankx everyone for taking the time to reply and share your experiences. It has really helped me so far and I am sure when I hit another stage I will use this forum again. Can’t get an answer to the 11 week wait, but good to know the timings for my tests now are about right.
I must admit yes I have crumbled and do wonder how I am ever going to get through this. I have not been back to work since being told I have cancer, only told very close friends and hid myself away as I’ve been a bit of a weeping mess.
It’s in my nature I’m afraid to jump ahead to the worst and over think everything.
I think once I know what , how and when I will feel more in control and on the road to recovery as you say.
X
Hi Vintage,
So sorry you have had to join us here. I think what you are feeling just now with regard to jumping ahead and thinking the worst is what we all go through at this early stage. Many of us would say that this part is the worst when you are unsure about what’s going to happen next. The waiting is agony and you have had more of it than most. Hopefully everything will go more smoothly from now on.
From your vantage point just now it seems like a huge mountain to climb and you might doubt your ability to get through it but you will. Almost ten months ago I was in a similar place to you and wondered how I’d get through but here I am just back from the hairdresser after my first hair cut in seven months and I’m starting to feel so much more positive about everything.
Good luck with everything. Stick around and let us know how you get on.
Ruth xx
Hi
Good to hear you are at the other end of your treatment Ruth and doing well.
Sue, you have a great attitude and I will try to keep your comments in mind. I will be thinking of you on Thursday, I have my MRI that day also.
Hi Madhatter
I’m having a lumpectomy and SNB on Wednesday as well. I too am petrified. I’ve to be there for 7.00am, get a wire in and a radioactive dye.
Please let us know how you get on, I will also post but perhaps not until Thursday as I’m staying in overnight due to living alone.
Best of luck. xx
P.S. Sue, thanks for that info about never getting blood taken, injections etc. on that arm, I never knew that. I’m right handed and my lump is in my right breast so usually get any injections, bloods etc. on left arm but I have to be sedated for the dentist and the cannula is always in my right arm due to the layout of the surgery.
Hey Vintage
That’s bloomin awful ref your delay in diagnosis, but too late to cry over . . . blah blah. Ruth (Peggycat) is to be well listened to in her words.
Ref arms and future needles/cannula’s etc., please take note of my current post in “Surgery” with ref to “total axillary/underarm lymph node clearance”, as I’m 10 yrs down the line to and let me tell you - if YOU and ANYONE ELSE reading has had full lymph node clearance , YOU SHOULD HAVE BEEN TOLD THIS. Absolutely NO excuse to NOT have been.
I’m frankly SHOCKED at lack of info given and also lack of speed at gp’s reactions!! As for your dental or anyone elses surgery “lay out” with regard to which ARM is used - absolute load of BUNKUM !!
Good and better luck to all of you who may be reading this.
Delly xxxx
Hi Delly,
Sorry for contradicting you. I have been told re the arm with regards injections by my nurse and also researched it. Breastcancer.org has a long article in it! It is about risk reduction!
Xxx
Hi Sue,
You wern’t contradicting me lovey and I wasn’t you. Think you may have misread what I was saying.
I was saying to Haz, that the layout of the dental surgery shouldn’t dictate which arm a person has sedation cannula in. Sometimes one arm is better, vein wise than another. That’s without the problem of lymph nodes affecting which arm CAN be used.
Thanks for the tip on the article. Yes I know it’s down to preventing infection. That’s what I saying in my post. Plus it can also cause lymphoedema. But my post is asking, if anyone has BOTH arms immuno-compromised, as with myself - WHERE are they having blood taken from, or cannula’s inserted.??
Loadsa love
Delly xxx
.
Hi again Sue,
I can’t find that article. Please can you point me in the right direction to it.
Many Thanks
Delly x
Thanks for that Sue flower. Will take a shufty at!! I must say, you’re good on the sources of information.
You doing ok??
xxx
Hi Delly,
Had my surgery yesterday and was in overnight so am just catching up with posts.
Yes, my dentist always used my right arm to sedate me as it’s easier for him but he is very nice and specialises in sedation, he teaches other dentists, I’m sure he will be very accommodating.
Who knows, after this battle I may find myself strong enough that I no longer need sedation at dentist, although the primary reason for getting it is not due to a phobia of the dentist per se but rather that I have a bad reaction to the injections, even the non-adrenaline ones.
If it wasn’t for Sue’s post I would not have known about this issue as nobody told me. I have since had it confirmed as Sue’s post prompted me to ask.
Regards
Hazel.
Hey Hazel,
I so hope you’re doing ok and well after your surgery.
As I previously said, being 10 yrs down the line, and having had it DRUMMED into me THEN by BCN’s and surgeons, about NOT having bloods, anaesthetic, blood pressure cuffs in arms that have had lymph node surgery, YOU SHOULD have been given the same info. Am shocked that you haven’t. Please take it up with them at your next appointment - it’s important.
Lotsa love
Doolally xxxx.
Hi, can confirm it is for always. You might want to get yourself a medi bracelet for that arm. If you still fear unsure will try and remember a relevant link as to why tomorrow. So glad for you that you got through it better than you thought. Xxx
Hi Girlies,
Both my ops were PRE SNB, so both full node clearance, so I can’t comment Hazel and Madhatter. But mine is always to avoid. If in doubt, the best thing to do is to contact your BCN and/or ask your surgeon at your next appointment to confirm it all, as SueHS says.
I’m thinking you both are on the waiting bench for results now, are you. Soooo pleased to hear your both doing so well post op.
Incidentally - are any of you in the Manchester area or NE Cheshire?? If so, did you have your surgery by an oncoplastic or plastic surgeon?? and can you recommend who you had. If any of you are and have, can you email me who your surgeon is. We aren’t to mention names on the “Open” public posts.
Whereabouts are you, SueHS ?? Glad to hear you recovered so quickly from your surgery and glad to hear you went for immediate recon. Did you go for silicon or self tissue recon ??
Despite me still only being at the expander stage (silicons should have been installed 2 yrs ago but due to surgeon cancelling a week before, me then taking a bad prolonged mental dive and now time taken looking around for another surgeon still haven’t sorted), it’s done wonders for my confidence to see and feel two bumps after 7 years without. And I’d always recommend recon if its able to be done especially to single women. Even better if it’s immediate.
Love and hugs to everyone
Delly xxx