Hi, I’m 40 and was diagnosed on Friday. I don’t have any details of grade, size or anything because they got my initial pathology results through very quickly as my tumour is large and they haven’t got all the results yet. I also don’t know if there is any spread (although I am terrified because the lump is large and they think it is not new).
The breast surgeon told me I have to have chemo first to shrink the lump before a mastectomy. He then said I may have to wait up to 4 weeks to see an oncologist and start treatment, although my MacMillan nurse said she’d try to get a quicker appointment. I am so worried about waiting that long. Is it possible to get a private appointment to get things started off quickly with the same consultant I would then see under the NHS? (we don’t have insurance but could afford a few appointments). Would this make things any quicker or would I still have the same wait for chemo after the appointment anyway? How would I go about it - do I need a GP referral or just ask at the hospital?
Love to you all,
Joan
Hi Joan and welcome to the BCC forums
In addition to the support and shared experiences your fellow users will be along with shortly, pplease feel free to call our helpline on 0808 800 6000. Lines are open 9-5 weekdays and 10-2 Saturdays and our team are on hand with a listening ear, support and information to help you through this difficult time
I am posting a link to the BCC 'Younger women’s" information page which I hope you will find useful as it contains lots of information and further support ideas:
Take care
Lucy
Hi Joan.
I was 49 when diagnosed last sept. Tumour was large, 5cm, I had chemo first, then MX, I am now waiting to start Rads.
The reason for the delay is that they have to do tests on the tissue samples, grow cultures in the Lab, and test with various chemo drugs to see which drugs the cells respond to. Also check for hormone markers and HER status. All of this does take time, but enables the Dr to give you best chemo regime targeted to your particular type of cancer cells.
I had a complete response to chemo - it shrank with each chemo dose, and by the end was just fragmented dead cells. Still needed mastectomy and lymph node clearence just to make sure it was all removed.
I really feel for you, waiting to start treatment is so scary, but necessary to make sure you get the best chemo regime for you. When you see your oncologist they will have all the results and will explain the benefits and side effects of each drug you will be getting.
I cant answer whether you would be seen any sooner if you went private. I can say that I am happy with my treatment with the NHS, all of the consultants I have seen have given me as much time as needed to talk things through and the support from the Macmillan Nurses has been amazing.
Have you heard back from the nurse today yet? Can you call them? Hoping you feel a little easier after speaking to them,
x sue
Dear Sue,
Thank you so much for your reply. I spent most of yesterday morning speaking to my Macmillan nurse and phoning up private hospitals to try and arrange as quick an appointment as possible. I now understand what you said about needing the results of all the lab tests. I have an appointment with an NHS consultant on 29 May - seems a lifetime away now, but I could only have got a private appointment a week earlier anyway, and the private consultant said to my husband that he would not advise us to spend our money for the sake of a week when I will get exactly the same treatment with a consultant he knows and trusts on the NHS.
I’m not really scared about starting treatment - I want to fight this as soon as I can. My big fear is that it may have spread because of the size of the lump. I will just have to wait for the scans I suppose. My children are only 6, 9 and 12 and I am afraid for my husband and them rather than for me.
I was so encouraged to hear that the chemo really worked for you to shrink your lump. It has been so good to hear from someone else whose tumour was large - people have been trying to make me feel better by talking about success rates but I know they are talking about tiny lumps. I pray that it will be as successful for me and that I don’t have any secondaries - starting to imagine all kinds of symptoms! I will hold your story in my head when I am feeling low.
Thank you,
Joan x
Sue,
I thought I would just add to this thread in the hope of slightly putting your mind at rest a bit. I very rarely come on to the forum now, I was just answering a message.
I was dx 3 years ago and my lump was huge - 5cm. It just seemed to appear overnight as I like to think I would have noticed it before. From the start I was told chemo first, then mx, then rads and because it was HER2+ I had 12 months of Herceptin.
From being dx I had approx. 3 week wait to see the consultant but following that started chemo 2 days later. Like Sue I had a total response to chemo and had to have a market put in as the lump shrunk to only dead cells. Because I this I only had to have a lumpectomy then and even now the biggest scar I have is from the portacath I had put in for the Herceptin.
Believe me this is worst time, the waiting. Now you know what is wrong you just want to get on with the treatment, but I was told in the whole scheme of things a couple of weeks make no difference.
As for spread I was told categorically that the size of the lump doesn’t necessarily mean spread - my nodes were completely clear. So please remember one doesn’t necessarily mean the other.
I’m kind of envious of you. At the time of diagnosis my tumour was of indeterminate size as it was cystic and shrank when they aspirated it. The size of it before aspiration was about 4cm as measured on the ultrasound.
Then after lumpectomy it was judged to be larger than 8 cm, as that’s what they removed, with two positive margins. I was told it had spread beyond that, but microscopical projections, so mastectomy was the only option, which I had the next day!! What foxes me is that the path results after mastectomy came back as no cancer in removed breast! WTF???
Now I am having chemo for this triple negative cancer, but I don’t know how big the damn thing was actually, or whether it is responsive to the treatment I am on, or whether, in fact there is anything to treat.
… Or whether, in fact, I even really had to lose my entire breast, although at the time it felt like the right thing to do.
All I wanted, initially, was to get rid of the thing, so I was relieved they didn’t want to treat it in situ, but at least if you do it that way you can tell if the treatment works!
I am in a bad place with this today 
Hi Joan.
Waiting to start treatment after being given the cancer diagnosis is the darkest place. I was convinced my cancer was growing fast, my breast was sore and red and bruised from the biopsies. After having no symptoms, no pain before, I was sure it was now hurting cos it was growing.
But the delay is necessary, you make sure you are on the right chemo for you.
I had a 6 week wait between the end of chemo and my MX - the body needs to recover before surgery - where I was sure the cancer was springing back into life.
The only advice I can offer is to trust the doctors. Sad to say as BC is so common, the doctors know what they are doing and there are time frames in which treatments ought to start.
Take the time waiting to treat yourself, go on a weekend away, take time to meet with friends, eat great food,
Morwenna, what an odd tale. At least the breast is now gone, along with the cancer inside. Great that it seems not to have spread outside of the breast. And you are having chemo, which should put an end to it. It is much more common to do the surgery before the chemo, so I guess most ladies don’t get the positive feedback at each chemo session that can lump is shrinking. Can you speak to your oncologist? May be able to explain what they think has been going on?
Hi Joan.
I can only reiterate what the other ladies have said. My cancer originally presented itself in my armpit (two lymph nodes affected) and following the mammo and us three tumors were found in my breast amassing to 9cm! After MRI a further two breast tumors were found and I had an mx and anc 3 weeks later. The fourth lump was 1.5 cm and fifth benign. The waiting is the hardest part. Every ache, pain, twitch convinced me it was growing and spreading, even now 4 weeks post op I have another 4 weeks to wait for further treatment to start And its frustrating. Back in the waiting room!!
Good luck with your onc ap. Once you know your treatment plan you will feel better. The hospitals know what they are doing and I can honestly say all the treatment I have had so far on the NHS has been fantastic.
Best Wishes
Emma xx
I can support what other ladies have said about NHS treatment it has been superb. My lumps shrunk and went smaller and spongy with letrozole for 8 months, then WLE on both sides. RESULT!!!
3 years later I am fit and happy, feeling confident that I am just as ‘safe’ as if I have never had BC
Keep hopeful
Grumpy
just to add in my two pennyworth - also had a 5cm tumour and had a long wait on the NHS. I actually went private for mx but in hindsight it wasn’t a great decision as I than had a long wait afterwards before chemo on the NHS. Many tumours are slow growing and a few weeks delay does not matter at all. I wouldn’t advise anyone to go private (unless covered for all treatment). all the best ladies, hope your treatment goes well xx
Thank you all so much for your positive accounts. It is exactly what I need. You are all so kind to post when you have your own troubles. I hope and pray things will go as well for me.
Anyway, today my Macmillan nurse phoned with a cancellation to see the oncologist next Monday. Although I’m nervous, at least I can start to fight. Also have appointments booked for MRI and ct scans. I am so scared of the results of those…my darkest thoughts. I pray and pray it hasn’t spread. I honestly don’t know how i would be strong enough to cope with that.
Any tips on getting through an MRI scan for someone slightly claustrophobic?
Joan x
Hi Joan Your post struck such a cord with me. I was diagnosed 3 weeks ago and saw the consultant on Thursday for mammo ultrasound and biopsies. Results tommorrow. My lump is large and he has advised me that I will be having chemo first then mx and then rads. Also biopsied enlarged lymph node in armpit. I have to have a ct scan on Tuesday next and I don’t know how I am going to cope with it. I fell apart at the clinic on Thursday and I have convinced myself that it has spread everywhere and I am in a real state of panic. Sending positive vibes your way and just to let you know you are not alone xxxx
Jayney 234 I have had all the scans apart from a MRI one which I am having next week I too had a large mass in my breast my lymph nodes came back clear but the consultant still advised a MX first I asked him what then and he said rads but after the op my surgeon and the onc discussed my treatment and decided to put me on Letrezole which I am on at the moment but I have another problem and have to see someone else for more treatment so I will cope with that when it comes from the start I have taken each thing as it came along and that is the way to treat this thing as for treatment these guys are doing this job every day and they must know what they are doing so I just go along and discuss things with them and put my questions to them it is a good idea to make a list of what you want to ask them and take it along to your consultations I hope all goes well for you I would just like to say I am an older lady its hard when you are hit with a thing like this when you have had nothing all through your life and then have to cope with I also live along apart from my little dog So cheer up and don’t panic just take each day at a time
Lots of love to you allxxxx
Hilary
Morning! Just a tip for the MRI if you are a tad nervous about it. get your GP or Onc to give you a prescription for a mild sedative to take on the morning. They can’t give one to you on the day. You take it about 1 hour before the MRI, Ask a pal or hubby to drive you, as you will feel a bit light headed. The MRI will be a breeze.
Your tumour has taken a long time to grow - so please, keep your cash in your pocket and see the NHS Onc, a few weeks really won’t make any difference.
Good luck for all your scans and appotments, cyber hugs to you…
Hi Jayney,
The CT scan itself is not scary at all - so just try and think of the scan that day and leave dealing with the results until another day. I haven’t had the results of mine yet, and have been told I probably won’t until after my first round of chemo. I think it’s perfectly possible to give yourself aches and pains by the power of suggestion, so try not to assume the worst about these either. My oncologist didn’t tell me too much after diagnosis (and I was too scared to ask), just that I was hormone +ve but concentrated on telling me what the treatment would be. So don’t assume you’re going to get bad news tomorrow - I worked myself up into such a state before my oncology appt and really it was just an appt to plan treatment.
What I am worried about now is timescale. My chemo idms scheduled to start on 5 June, subject to them getting a PICC line in the previous day. I’ve been told if that doesn’t work (my veins are smalk) there might be quite a wait to get a central line fitted because a different department (radiology) is involved, and that would put my start date right back. Meanwhile I’m living with this big lump… I might phone tomorrow and ask if they can make me an appt to get a central line fitted anyway and cancel if necessary, rather than wait until next week to start waiting for that. It all feels like it’s taking forever, I just want to get started!
Joan x