Newly diagnosed and worried about delays

I was diagnosed with IBC on 1 April. I have had symptoms now for 4 weeks. I’m currently waiting for appointments for various scans and to see the oncologist. I am lucky enough to have a friend who is a scientist developing treatments for breast cancer, otherwise I would still be waiting for breast clinic appointment. He encouraged me to phone the hospital and insist on an earlier appointment. My original one was scheduled for May! It took 3 weeks and a very painful, useless mammogram to get anyone in the medical profession to see me with any sense of urgency. Everyone was convinced I had mastitis even though my condition didn’t respond to antibiotics

Like most people I had never heard of IBC and have been really shocked. Now that I’ve learned more I’m worried about waiting so long for my chemotherapy to start. Is it usual to have to wait weeks after diagnosis? Does anyone have any tips for dealing with the anxiety while you wait for things to happen?

Hi Jan and welcome to the forums,

I have posted a couple of links for you, the first is our ‘New resource pack’ which is designed for anyone newly diagnosed, in addition there is a link to our publication about IBC, I hope you find these helpful:

breastcancercare.org.uk/server/show/nav.718/changeTemplate/PublicationDisplay/publicationId/82

breastcancercare.org.uk/upload/pdf/inflammatory_breast_cancer_jan_2008_layout_1_0.pdf

For further support or information please feel free to call our helpline on 0808 800 6000 which is staffed by breast care nurses and helpliners who have had an experience of breast cancer themselves, the line is open Mon-Fri 9-5 and Sat 9-2.

Best wishes
Lucy

Hi Jan

I had long delays so I know what it feels like! I was initially told I would have to wait 3 weeks for a biopsy result but went through the Patient Liaison at the hospital and got it in 10 days. I was then told I’d have to wait a month for a lumpectomy - although it looked likely it would be a mastectomy and that wouldn’t be done for at least 8 weeks!!!

In the end I got a second opinion privately (surgeon who then referred me to oncologist)and had to pay for scans (bone and CT) as well. that all came to £1500 - I was lucky becuase my family helped to pay. All my treatment since then has been NHS but those private appointments really helped to speed things up. I don’t know if any of this is an option for you as it is expensive. Also you need to check that they oncologist/surgeon would be willing to convert to NHS after the initial consultation. If you go down this route you will need your GP to refer you.

The ways I found to help with the stress of waiting were:

  1. To go and talk to my GP. He or she may be help with speeding things up etc
  2. Use the helpline for Breast cancer care and ask their advice
  3. Do something that you think will help your health generally. I completely changed my diet to make it very nutritious and cut out All things with sugar, high fat. There are various books around re diet and breast cancer.
  4. Went for lots of walks - good if you get into countryside or somewhere green
  5. Talked to friends and neighbours who were and are amazingly supportive.
  6. I wasn’t told to go and get my teeth checked before starting chemo which would have been really helpful as I’ve been having a problem and it’s hard to deal with while going through chemo.

Hope that helps and really feel for you right now. If you need any further info on the above, please say.
A big hug to you, Elinda x

Hi Jan - sorry that you have to join us…

I think i was quite lucky - i was diagnosed on Tuesday 27th May 2008 and then in the next week had all my scans - bone xray, chest xray, ct scan of abdomen etc, heart check - think that is all… but it meant the following wed i went back to see the onc - found out all the scans i had had done were fine and went straight from that room to the chemo room for my first cycle of AC…
How long are they talking about it all taking before you can start chemo?

Theresa x

Theresa i think you were really lucky or else I was unlucky with the wait. I would have had to wait two or three weeks for scans on the NHS and that would have delayed my chemo even more. Going for the private consultations I went from diagnosis to first chemo 4 weeks later. It would have been at least 8 weeks had I stayed NHS!

I don’t know what’s normal but I do know the waiting is horrendous. Jan please do go back to your GP and try to get things pushed forward. Don’t worry about being pushy you have to think of yourself in this situation.
Elinda x

Thanks everyone. It’s really helpful to hear other people’s experiences and how they’ve coped. I went away with a friend for a few days to the Trossachs in Scotland to soak up the scenery and have some fun before the rough stuff starts. While I was there I had a call from the breast care nurse and she has pulled forward the dates of my scans. It still seems likely it will be near the end of April before I start my treatment. She advises going private won’t get my chemo started any earlier now since I would still have to wait until next week to see the oncologist. There’s an Easter holiday in the way.

Best of luck to all of you. We certainly need it

Dear Jan
It’s a really horrible time for you and I just wanted to advise that I was weighing up going privately v NHS originally but due to the type of private cover I had, i.e. not gold standard I was advised by the consultant to stay on NHS he also told me that the treatment and waiting times would be the same. I found my lump on a Sunday, had appointment at hospital on the Friday plus mammograms, ultrasound and biopsy on the Monday, results on the Friday, bone scan that afternoon followed by more biopsies and a CT scan the following week and started chemotherapy 4 weeks from point of first appointment. It would have been a week sooner but went to see a fertility expert first so had it a week later. I cannot fault my hospital.

Good luck with it all
Ruby x

Hi Jan

I’ve just caught your post and thought I would say hi, but not in the best circumstances of course.

Please don’t worry too much about a delay: I found my original “strange” hardened breast on 8 April last year, and wasn’t actually diagnosed until 4 Jun following a biopsy, after several times being told I didn’t have anything serious. Even then I wasn’t diagnosed with IBC until around Sept time, initially they thought it was IDC.

Although my breast grew in size very rapidly, the delay of 8 - 9 weeks in my case, didn’t seem to alter the outcome. My bone, lungs and liver were ok (she sighs with relief)!

I can’t comment on treatment in UK because I live in France, all I can say is that they worked pretty quickly here to get my chemo started but I know that things are a bit different for you.

It takes time to adjust to this news, I am still recovering from the effects of taxotere/mx and still Herceptin, but you will get there and this site is a great support network.

Take care
Carole x

Dear Jan

Really pleased to hear your scans have been moved forward. The trip to Scotland sounds like that was a good idea too.
Hope it all goes well for you.
Elinda x

Hi guys,

Thank you for all your support. I know this is probably premature but I’m so pleased I have to tell you. I had the results of my scans and my first round of chemo last Tuesday. The scans have all been clear and best of all the tumour has begun reducing already. I can at least get one of my normal bras on now which for the last few weeks was impossible. Hopefully this is a good sign.

So far I haven’t had too many side effects from the chemo. I’m preparing all the same. I got my new wig on Wednesday and my husband likes it so I feel quite confident about wearing it. (He’s terrible at lying so I know he’s telling the truth.)

My mum, who has lung cancer, has just finished her last rads and she is doing well so this has been a better week for us both.

Jan

Jan - glad to hear that the chemo is going well and that things are seeming more positive now for you and your mum…:smiley:

Did they tell you what size the tumour was to start off with? I found i was soon able to wear my bra again as well…:smiley:

Theresa

Jan, it’s good that you have started treatment already, and it sounds as though its shrinking the tumour too.

Take it easy, and hope you don’t feel too bad from the effects of chemo.

Peacock x

I am hoping someone can help me or put my mind at ease. I went into hospital on 12 March 2009 for a lumpectomy. I was lucky the results came back benign. Everything seemed to be ok.

Approximately, 6 weeks ago I suddenly got a lot of pain in my breast that I had the operation on and it swelled up. I had done nothing unusual as I was sat on the sofa watching tv and it suddenly started. This continued on and off for a few weeks and then last weekend it was unbearable. Everytime I moved I was in pain and my breast swelled up. I made an emergency appointment for the Monday morning and the Doctor checked the scarring out. The breast was warmer than the other and I had pain when she touched it. She diagnosed me with a breast infection and as such put me on a course of antibiotics. I have finished the course but I am still in pain, still getting swelling and the breast is still warm. I have a follow up appointment on Thursday.

I am slightly worried now after reading up on this as originally I only typed in mastitis into the internet and this condition came up which I have never heard of before. The only positive I am getting is that I had an operation in March and was told everything was ok but this has flared up suddenly. Can anyone offer me any more advice.

Andrea - sorry that you are going through this worry…:frowning: As you say - hopefully the fact no suspicious cells were found when they did the lumpectomy it will mean this will be a particulary nasty infection… It’s good that you are seeing the gp again on Thursday - i guess she might try you with stronger tablets or refer you back to the breast climic…

You could try giving the helpline on here a call as they may also know of other things it could be…

Theresa

Hi Andrea,

Sorry to hear you’re having this worry. I did the same thing after my doc diagnosed mastitis and I found IBC in google. The internet can sometimes cause more problems than solutions. I was unlucky but most cases really do turn out to be infection. I had a bit of pain but nothing as bad as you describe. I also had all the other symptoms like skin changes and nipple retraction. The affected breast was very hard, rather than soft and squishy and it was very red.

It seems unlikely yours will be anything other than infection since you’ve already had a lumpectomy that was clear but you are doing the right thing by going back for another appointment. It could be the infection got there as a result of the lumpectomy. I know it’s easier said than done but try not to worry too much. Come back and let us know how you get on.

Jan

Thank you for your comments. The Doctor has referred me back to my consultant and requested an ultra sound. It’s another waiting game.

I have a habit of keeping my feelings to myself and I don’t think I still came to terms with the lumpectomy. Oh don’t get me wrong I was over the moon that it was benign but the emotions were something I didn’t know how to handle. NOw this has been thrown at me, it’s something else.

I agree my lumpectomy was a benign result and that is the positive I am getting from this but you still get that niggling doubt.

My partner keeps saying its an infection and I should of gone back weeks ago when I first started experiencing pain and honestly, any other time I would agree but you don’t get rid of the niggling conversation you have at the back of your mind.

Just have to wait.

Hang in there. I know it’s hard to believe but the waiting really is the hardest bit. Most of us who have been through it agree that, whatever the outcome, knowing what you are dealing with is less stressful than the wait.

Jan