Very anxious and doubting my treatment

I had breast pain for 8 months before seeing my GP in April this year.

My GP thought she could feel a lump but that it was probably a cyst, and put me on a non-urgent referral. The referral was 16th April - my 36th birthday.

I was seen at the end of May by a “breast specialist” who had a very quick feel and said categorically that there was NOTHING WRONG with me, the pain was “totally hormonal” and I should take Evening Primrose Oil. I said if the pain is hormonal, why is it ther all month, every month? He smiled patronisingly and said “there is absolutely nothing wrong with you, take Evening Primrose oil.”
I told him my maternal grandmother had died of breast cancer at the age of 48. He said reluctantly “I will refer you for a non urgent scan to put your mind at rest, but I assure you, you do not have cancer, this pain is very common and totally normal.”

The “non-urgent scan” appointment was on 17th June, at a different hospital. The ultrasound immediately showed a tumour. I had a mammogram the same day, which showed nothing. The next day, 18th June, I had a core biopsy.

On 23rd June I was given the news that I had an invasive breast cancer.

I had a wide local excision and axillary clearance on 14th July. I waited 15 days for the pathology results. These were:
Grade 1 ductal cancer.
1/14 lymph nodes malignant.
Lobular cancer in the cavity biopsy therefore no clear margins.

I had a re-excision on 18th August. I came home the next day on my own insistence (had waited 7 hours on a gynae ward bed for the operation, asked 5 times for food when I came round, all these requests were ignored, asked for pain relief, was given 2 paracetamol, my blood pressure, temperature, pulse weren’t checked until 4 hours after the operation, big (approx 6 cm) splash of blood - not mine - on my pillowcase - had to ask several times for other patients’ urine samples to be removed from the lavatory so I could use it.)

On 19th August when I came home, I had a letter saying my appointment to see the oncologist will be 18th September. My consultant and BCN have told me that I would be advised not to have chemotherapy “because it will only add about 3%
to your 10 year survival chance and could make you very poorly.”

I am very frightened that I am not being given the correct treatment, and that I am having to wait a long time between appointments.

I am a single parent of a 9 year old daughter.

Is this waiting time usual?
Can I insist on having chemotherapy?
If I do and I become “very poorly” will it be seen as my own fault?
What are the risks of chemotherapy?

I am very scared and do not have trust in my PCT to make the appropriate decisions to keep me alive long enough to look after my little girl.

I have complained about the original misdiagnosis and received a standard fob-off letter stating that “it is not unusual for breast cancer to present with non-cancerous features”.

Please help with advice if you can,

Irina
x

PS I should add, my cancer is 100% oestrogen and progesterone positive and I have been told that radiotherapy and 5 years of Tamoxifen will give me a 93% survival prognosis over 10 years.

I was offered IVF but turned it down on the basis that the egg boosting hormone treatment would give me more oestrogen and I didn’t think the 20% chance of having a pregnancy when I’m 41 or 42 and off Tamoxifen was worth the risk of an oestrogen flush here and now.

I am grateful that my cancer has been found and that it is grade 1 but I do not understand why chemotherapy is being given as standard to other women my age and I am being discouraged from it.

I have had a test for HER2 status but it isn’t known yet.

I have no money to go private.

Irina x

I was grade 1 with an intermammory node affected but no lymph nodes affected. Prior to the lab results it was indicated by surgeon that it would be surgery, chemo, rads then tamoxifen/herceptin as determined by path test. After path results came and grading established I was told by oncologists that chemo would increase my chances by perhaps 1/2 - 1% and that as my prognosis was good to start with they did not consider that the benefits of chemo were worth the risks of chemo… my tumour was borderline er+ (5%) and pr-, HER2- I was given 29 rads and am on tamoxifen.

I’m not sure if their decision would have been different if I had had a lymph node involved instead of an intermammory one.

I hope some others can come along and give you some constructive advice.

Hi Irina,

I think it might help you if you give the helpline a ring and tell them the things you have said here, I’m sure they will be able to advise you as to your options. Unfortunately the helpline is closed today, Sunday, but is open again tomorrow at 9.am until 5pm (Mon - Fri 9 - 5, Sat 9 - 2) The calls are free so there’s no need to worry about the cost of the phone call, number to ring is 0808 800 6000. Hope this helps.

Kind regards,
Jo, Facilitator

Dear Irina,

I am so sorry that you have had such a hard time with your local hospital and completely understand your anxiety. Everyone is entitled to ask for a second opinion on the NHS at another hospital of their choosing. You can either be referred by the consultant at your present hospital or if you don’t want to ask her/him then your GP can refer you. Ask for your GP’s advice on a centre of excellence for breast cancer in your area. I don’t know which part of the country you live in…but the Royal Marsden in London or Surrey and Christies in Manchester are among the best hopsitals…but there are many others.

Its really important that you have confidence in thosee treating you. I hope too that you will ring the BCC Helpline because they give great advice.

good luck and best wishes

Jane

Hi Irina

I can only echo what JaneRA said above. I lost confidence in my first hospital and referred myself to a huge oncology NHS hospital in Leeds and felt my treatment was handled much more professionally. You can ask for chemo if it would give you more reassurance, irrespective of the 1 or 3 per cent benefit they mention. Tell them you don’t deal in statistics, that you just want as much treatment for this disease to make you feel you have done all you can. Saying that, do your research into chemo, if it does only give you 1% then try to weigh that up with the shit side of chemo and the quality of life you have whilst having it, I had 6 and whilst I am glad it’s done and out of the way, I’m personally not sure Id do it if my statistics were so high like yours are. If you do have horrid side effects, which are treatable, then no they won’t blame you for asking for chemo in the first place, they’ll just treat you for the side effects. What has helped me through this minefield of treatment and options etc, is educating myself as to what’s out there and asking for what I want. I think this forum is fantastic for helping you learn just what is out there and how you can go about getting the right sort of care and treatment for you. Good luck and sorry you had such a rubbish time. Carrie

Hi Irena

I was dx 24th Dec was 39 (am 40 now) and like you was told to expect chemo as women my age get the most mileage out of it. My final dx was grade 2 1.8cm ductal invasive 100% er+ oestrogen 80%+ progesteron HER2 negative no node involment or vascular spread. I was all set for chemo and even booked a shaving head party but was then told if I had 20 rads 5 years of tamoxifen and 2 years of zoladex to shut my ovaries down it would give me 94% of 10 years plus. The only benefit for me of chemo would be to shut down the ovaries which the zoladex does instead and the chemo was only 0.8% difference.

I decided to go for what the oncologist was suggesting and so far so good. They keep a really close check n me and I have an appointment with someone every 8 weeks (alternating between breast surgeon and oncologist) I went back to work on the 1st April and apart from the hot flushes from the menopause nothing much else to report.
When I was diagnosed there were very few people on here with similar treatment programmes so every time I pop in (not very often these days) and I see someonewith a similar dilema I try to say hello. Only time will tell if I have made the right decision but I just wanted to try and help calm your fears that you may not t being offered the right treatment.

Good luck with everything. I am being treated at Stepping Hill and Christies if thats any use to you. Any other questions just give me a shout.
Shonagh x

thanks everyone, I am being seen by an oncologist from Christies but at my local hospital, it just all seems to take so long. I will ring BCC tomorrow (is the helpline open on a bank holiday?)
Irina
x

Hi Irina,

I’ve just sent you a message on facebook ,I’m going to christies

Hi Irena and Walton

Good luck with everything, I see my oncologist as Stepping Hill in Stockport too, he has a clinic at the Bobby Moore unit every Monday. He is Dr Chitallia (apologies if its spelt wrong) and he he is very approachable as are the staff and surgeons on the Bobby Moore unit. I had my radiotherapy at Christies. The breast nurses are lovely ladies at the Bobby moore. I live in Middlewich but was still registered under a Stockport GP at dx and even though I have now changed to a local GP they would still refer me to Stepping Hill if need be. From what I can gather you can request whatever hospital you want these days.

Hope your weekend hasnt been too tense. we all know what its like waiting for results and appointments and it seems to be the waiting that is the worse. I had a couple of issues over the Easter weekend and nearly drove myself mad googling information waiting for the clinics to open on Tuesday.
Sending out good thoughts to you. Be kind to yourself hun. S x

I’d go with your gut feeling, certainly I wouldn’t be confident to stay in a hospital with blood stained pillows etc. I didn’t like the first hospital I went to as it had filthy toilets and carpets. They also misdiagnosed me for 6 months. I also had grade 1 cancer, but no lymph node involvement. I’d go to a cancer centre of excellence, they have the latest on each kind of cancer. I didn’t have chemo but I had no family history of breast cancer and I was 48 when diagnosed. Chemo can lead to other cancers later on, so if you can avoid it I would, apart from the side effects during treatment.

All cancer treatment has risks though

Mole

Hi cutard
Yeah I relly feel comfy at Stepping hill and also ocn at stepping hill last monday go to chrities tomorrow for tattoos Might get a shamrockLol

Hi Walton

Hope your tattoos went well, I only had two but one is right in my cleavage and looks like a nasty blackhead but small price to pay. Good luck with your rads, I had mine in February so seems ages ago now. The staff were lovely and made me feel completely at ease even though I was lying on my back with my baps out!!!
I gave up on the gown in the end though and invested in strappy vests that I just pulled down when needed.
If you can get booked on the lymphodema physio session I would definately recommend it, lots of useful info.
Good luck with it all and be kind to yourself, It was the last week that made me most tired and even more so once I went back to work in April. I still get tired now but not sure how much of that is the early menopause from the zoladex and hot flushes.
Check out the hints and tips from people on the rads threads, the hairdryer on cool tip is great.
S x

Hi to all,
this thread makes me alittle bit homesick I was treated at stepping hill and then christies for rt. Sue Naylor was my bc so if she is yours tell her I am still around.

Love Debsxxx

Irina

As your bc was 100% ER+ and Grade 1 then chemo could be ineffective whereas hormonal treatment:Zoladex and tamoxifen have been shown to add significantly to survival. That was my treatment;dx 2005 when one of my daughters was 9- single mum too! Hot flushes and dryness a bit nasty but bearable. A friend who had a similar cancer to yours and mine had neo adjuvant chemo to try to shrink her tumour before surgery. It didn’t do anything and her consultant, an eminent fellow at the Marsden was anxious to get her on to hormonals.

Check out the St Gallen guidelines (2005) for international consensus on bc treatment. if you like. You can google it

Very best wishes

Kitty x

Hi Debs in Cornwall,

Sue is still working at the Bobby Moore, I will be going on the 29th Sept so will pass on your best,

S x

Thanks custard, she is such a lovely lady tell her Ian Brown is here in Cornwall.

Love Debsxxx

Will do, She was there is Sue and Debs and they are both lovely women. Sue was the lady who explained everything to me when I was initialy DX, very straight talking but fantastic. Her and Debs make a fantastic team. I couldnt have done it without them.

Sx

I rang her in Feb this year she knew who I was straight away. It was 1999 when I was in hospital. All those people she must have dealt with and she still remembers me.
I am in Stockport 12 th Sep as it is my grand daughters bithday.

Love Debsxxx

At last - I’m back on line!!!

I too am going to Christies!