Scared and anxiety ridden

[Lavenderlassie]

Hallo cs1,

Sorry that it has turned out like this, but better knowing than not.

It is strange how it is better when you start to know a bit more, and it doesn't surprise me either that you like your consultant more after this hurdle.

Wishing you all the best results with your next lot of tests, and a swift move on to chemo.

Chemo before surgery has two advantages that I have learned from this forum-it can shrink down the lesion so that lesser surgery can deal with it, and you know that it is working as you can see it!

Lavender

xx

[cs1]

Well the waiting is over, and I now know the truth!!

I have grade 3 invasive ductal  with lymph node involvement it is about 66mm in size.

I have been booked in for a bone scan, mri & ct scan next week and then once those results are back I am booked to see oncologist.

I am starting with chemo, then surgery. They want to shrink the size before I have the surgery.

I can't believe how much better I feel now it is all confirmed, and things are moving along. I suppose I had already accepted that it was C, so not so much of a shock to find out.

But I have to say that the waiting is really the pits, and my heart goes out to any of you ladies that are now in that position!!

And as far as not liking the consultant, well that has changed too after seeing him today. I also spent some time last night reading up about him. He is highly qualified at this so I feel in safe hands.

I will now be moving my posts along to the next stage on here, but I will keep an eye on here. Maybe I can help someone else who is just starting possibly on the same journey as me.

[Lulu34]

Oh thats a bit of a worry for you when they havent told you would need one.... It coukd just be a mistake thiugh as they dont usually orgaise follow up scan untill they have a diagnosis so its more likely to have been a mistake i think.

It could be something completly unrelated and coincidental eg if your gp had maybe requested a scan.

Most people dont get CT scan after diagnosis routinely although i know some units do it for certain situations where they want more information or sometimes before organising treatment.... But they would normally only do this after you have had results.

Might be worth a phone call or you can always ask on thursday

Best of luck xxx

[cs1]

Thanks for the replies, I called MacMillan today for a  neutral view. They said there is no difference in treatment or outcome. So I think I will stick where I am.

Another issue now - got home and found a letter saying have to have CT scan. That is next Thursday, a week after I get results. Well that has really done it for me!! now my mind is working worse than ever. What have they found that means I need a body scan. Is this routine or not? Has anyone else had this as well.

To be honest it is all getting too much now and it isn't even Thursday yet!! Not sure how much more of this I can take.

[Lulu34]

Sorry my phone is playing up!

Anyway my friend has a few gripes from the private sector. She said its very isolating as its a private room and she would prefer to speak to others going through the same thing. She also had chemo in a private room. And there was only one breast care nurse and she didn't get on with her but there were no option s to speak to any key else.

Now these could also occur possible at some smaller units too even if not private.

She did like being able to get to sleep because she had a room to herald and her visitor could visit when it suited her and not when it suited the ward. And the food was 100% nicer!

If you don't have private insurance and you don't like your consultant you can request somebody else..... The surgeons locally who do private work also work in the NHS so its possible that grumpy surgeon could be he one you see privately anyway..... You don't have to see a surgeon you don't have faith in regardless of NHS or private but not sure how you change him in the private sector.

Maybe you can find some others being treated locally who can recommend a doc... not openly on he board but maybe by private message. or maybe find out who do private work and google them for info.

As for my friend she wouldn't get funded for new drugs either even privately as they used the normal recommended ones so would have to pay over and above the private costs for them.

If you have private insurance you may find they will pay you to use the NHS. My friend got something like £200 a night for using the NHS instead of going to the private hosp.

Good luck xxxx

[Lulu34]

My consultant is the top dog locally but only works for the NHS and I wouldn't see anybody else. But that may just be me.

One of my best friends was treated privately and Ashe had a couple

[Lavenderlassie]

Dear cs,

I really don't know the answer to this.

All my treatment has been NHS, from diagnosis by screening through surgery and chemo.

I have had a lot of waiting around, but feel the choice of treatment would have been the same either way.

The consultant performed my surgery as the lung people said it had to be as short an anaesthetic as possible- a rare advantage of grotty lungs!

I have seen the consultant quite often in review, in fact more times than not, more than I do in the lung department.

Being seen privately means less waiting, perhaps more time to discuss things, and the guarantee that the surgery is done by the designated person. I think one loss is that you may not have a Breast Care Nurse which I would really miss.

Does it give you access to more drugs?

More views please. Should this be in a separate thread with Private v NHs in the title?

Is there such a thread in the archives?

Best of luck, I can see your husband is trying to cherish you the best he can, which is lovely.

Lavender

xx

[cs1]

Hi all,

Me again, well not long to go now till I have my results!!

My husband has now gone into overdrive and is looking at the possibility of private treatment once I find out.

My question is does anyone have any thoughts on this at all? To be quite honest I am not keen on the consultant I saw I found him a bit cold and too clinical (no joke intended!!) However not sure if this was a reaction I would have had to whoever I saw.

Is the treatment any different between NHS and private, better results and outcome. I would be glad of people's thoughts on this issue.

[Lulu34]

Hi CS1

Its Nerve wracking waiting on results and the not knowing can be worse than the knowing.

Depending on what shows up on your mammogram some doctors can be confident telling you it is or isnt cancer, but some areas dont look very suspicious, but suspicious enough to need a biopsy.

There are some lesions that can really look undecided and the result maybe undecided too like the original poster... Its not cancer but its not something they can just forget about either.

In your case your doctor sounds more sure and im sure there will be a little part of you hoping he is wrong.... And i always say if they knew 100% exactly what it was they wouldnt need to do a biopsy.

But these days cancer is very treatable and most people with small early breast cancers do really well following treatment.... There are loads of ladies on here who can testify to that.

Please come back and let us know how you get on and if you need any more advice and support if your going through treatment this is a fantastic place to get that.... Or even just to offload or share you worries we are all here to listen and offer a shoulder to cry on.

Hoping for the best news possible on thursday.

Love and hugs

lulu xx

[cs1]

Thanks for that both of you!!

I suppose the worst part is that your mind runs wild with how bad it could be. I just want to find out and get started, I want my life back. At the moment I don't feel like the same person I was last Wednesday.

I will come back and let you know how Thursday goes and what I find out then.

Thanks for the advice!!!

[Lavenderlassie]

Dear CS,

It really is almost tougher doing the first bit than later things, perhaps because we are in shock so much, but also because we haven't learned how many people there  are around to help us.

I was shocked too at how sure the consultant was,  got very cross on my own, thinking "How can she say that when she hasn't got the histology". But in the end the baptism of fire helped me.

I do remember being quite solitary for a lot of my waiting  week, my OH is not chatty but he probably found that the quietest week ever from me. Really hard for your husband that he lost his mum to BC,  but things have moved on, and diagnosis and treatment are improving year on year. He might benefit from time with  the Breast Cancer nurses too.

Our sons are much older so I felt I had to tell them I had had tests that might be cancer, even though the consultant had said definitely that it would be cancer. They were great, really supportive with extra phone calls, finding me nice things to do for the good days of chemo etc.

12 is a bit young to deal with might be scenarios, and you will know more when you go back of what they are planning for you, which makes it easier perhaps  for a child to cope with.  I wonder what other mothers think?

Yes, we plan our last days then go and be seen and discover what can be done. We have to look at statistics to make decisions but after that we are not statistics, we are individuals. And more of us survive than not!

Distraction is the name of the game for the waiting week, I remember going to Pub Quizzes and things, lots of puzzles and gardening.

Itreally was easier from then on, the BCNs were brilliant and you become very busy learning a whole new world and its language.

And this place is the best for information, use the information side, the helpline, your own BCNs, and the forum. Don't Google you are liable to find out of date info.

Best of luck!

[poemsgalore]

Hi CS1

I'm afraid there is no real answer as to how people cope with the waiting. Some don't, it drives them crazy. All I can suggest is that you fill your time doing things you enjoy.  Visit these forums often, and rant, rave, ask questions, anything to help you through it. But please do not Google as that really will drive you crazy as most things on there are either out of date, or simply wrong. Just stick to this site and the Macmillan site. 

As for when you have been diagnosed, and the doctors put a treatment plan in place, you will find that you feel much better. You will know what is going to happen and that will put you back in control. When you go for your biopsy results, take hubby with you, and a notepad and pen. Prepare some questions before hand to ask the doctors. Such as :

• What type of breast cancer is it?
• Is it hormone sensitive or not?
• What kind of surgery would be best for me to have?
• How long will I have to wait before my treatment starts?

This website has a selection of booklets which can be downloaded as .PDF files to read with Acrobat Reader (free to download if you don't already have it).  Here are a few links to ones you might find appropriate for you:

http://www2.breastcancercare.org.uk/sites/default/files/your_breast_clinic_appointment_bcc_70.pdf

http://www2.breastcancercare.org.uk/sites/default/files/bcc44_bc_and_you_2010.pdf

http://www2.breastcancercare.org.uk/sites/default/files/in_it_together.pdf

When you have your diagnosis, you will be introduced to a Breast Care Nurse who will give you her telephone number, so you can contact her to ask any questions you might have thought of at a  later date. She should also give you some literature about the type of cancer you have.

Sending you both hugs and best wishes.

Poemsgalore xx

[Jo_BCC]

Hi cs1

Welcome to the Breast Cancer Care discussion forums, you've come to the right place for some good, honest support from the many informed users of this site.

While you are waiting for replies, I have put for you below links to some of BCC's publications you might find helpful. I know you say you don't want to talk to anyone about this but  there is extra support  from our  helpline team who are just a free phone call away, 0808 800 6000 lines open Mon-Fri 9-5 and Sat 10-2.  They're here to support you through this.

http://www2.breastcancercare.org.uk/publications/diagnosed-breast-cancer/breast-cancer-you-diagnosis...

http://www2.breastcancercare.org.uk/publications/worried-about-breast-cancer/breast-cancer-families-...

Take care,

Jo, Moderator

[cs1]

Hi all,

I am new on here and have just spent some time readings posts.

I have just been to the screening clinic and had mammogram, ultrasound and core biopsy done. Have seen the consultant who has said, based on what he has seen that it is cancer. I go back next Thursday for the biopsy results and to find out how bad and treatment plan.

I am in total shock, my GP didn't think it was anything serious, but having lost both  an aunt (40 yrs ago) and my sister to breast cancer ( 25 yrs ago) I should have seen it coming!!

To be honest it is the waiting that is killing me, you think the worst and start planning your last days. I am really struggling to keep it together. My daughter (12yrs old) doesn't know anything, my husband does and as he lost his mum to breast cancer as well, I think it is really freaking him out.

Since I told him he has stuck to me like glue, all very nice, but all I seem to want to do is retreat from everyone. I can't think beyond next Thursday.  Yet I don't want Thursday to come round I feel like a prisoner going to the execution. He wants to talk about it, and I don't,.

I suppose the thing that shocked me the most was the consultant being so sure that it is, but I suppose when they see so many people they just get to know.

I just wanted to know how other people have handled the situation of waiting around, but also have they handled things once it was confirmed.

[Lavenderlassie]

Fabulous news,  Philibotte!  Celebrate and sing!

I am glad you didn't have to wait any longer, the strain is awful. It is funny how we worry about one thing  then  along comes another sneaky disorder getting under the radar.

I am OK, she says with British caution,  was diagnosed with Triple Negative Grade 3 Intraductal Cancer found on routine screening in 2010, so have passed my 3 year anniversary, after mastectomy and chemo.

I have bigger problems from a lung disorder, but a change to treatment for that this summer seems to be going well.

I come into the boards here less now, but need to see how some old friends are doing. And while I'm here tend to respond to anyone on the Waiters and Watchers bench, as I  am so grateful to the people who cheered me along.

Hope it all goes well for you now, keep up with the screening.

Lavender

xx

[Guest user]

Lavender, are you going to be okay? I got the biopsy results and it is an intraday gal papilloma with atypical cells that has to be removed! The radiologist said it presented with many more malignant features and was surprised. I am thanking God and am going to get active in breast cancer research and Rays of Hope and raise money! I have learned a lot from this lesson and I feel badly for others that aren't so lucky. I am in the US, and I lost my Mom to pancreatic cancer and my sisters and I are screened annually each year so this NEVER really occurred to me. I am going to slow down and enjoy life more and volunteer to help others. What is amazing is I am not going to focus on trivial deal. Thank you for your support and if there is anything I can do for you, Please let me know!
Love Karen P

[Lavenderlassie]

Oh, dear, Philibotte, you are still on tenterhooks. Whatever they are.

I don't think that the fact the biopsy result isn't back yet is bad news, sometimes they have more work to do, perhaps some of the staff are off sick?

My first biopsy result was back in a week, the second pathology result post operatively was available after 14 days.

Although it sounds easy for him to say, your internist is right to say that it is not the end of the world to have a cancer diagnosis. We have all been brought up to believe that but it truly isn't so.

Five steps ahead? A lot of us have been there, picking out our funeral hymns!

Especially if it is a cancer diagnosis, we need to slow down and take things one step at a time, as it is easier to deal with in our minds (and that has a kick back effect on our bodies as well as we stress out). Try not to borrow trouble from tomorrow.

I spent this time at the bottom of the garden digging and pulling out weeds- it was very useful, as I wasn't able to do so much post op!

Can't remember what I thought I would do if the answer was all clear-that didn't happen for me.

For you it still might and you can choose things like  having that vacation you always promised yourself, giving up smoking, or eating the "wrong" things, or just going round telling everyone that you love them.

I worked out that I would do what I had to do to get through it all, And hope that that worked.

And that I would make the most of the little things that make me happy, like birds and butterflies and flowers, and the people that I love.

And if that didn't work, well, I would have tried.

Sounds easy,  of course it wasn't, but working through it was better than not doing anything and going crazy.

As you said internist does that mean that you are in the USA?

That makes it harder for me to say where else to look for help- in the UK we have often volunteer run Cancer Centres attached to some hospitals where you can go for advice on relaxation and calming breathing-these things really do help.

In the mean time, carry on posting!

Lavender

xx

[Guest user]

As if I weren't anxious enough they called to change my biopsy results. I just about list it and called my internist. He was nice but frustrated with me and I told him What happened with the 2nd radiologist and he didn't seem to be too concerned. He said it can be benign or not but it isn't the end if the world if it isn't. He told me I am 5 steps ahead and I need to back down a few. How do I do this? And the biopsy results not being back? Is that more of a chance something is wrong?

[Lavenderlassie]

Dear Philibotte,

That is hard for you, I remember hyperventilating on the way to the first breast appointment so much I have made a point of going on public transport since if I can't get a lift. It also helps to have someone else at an appointment as one's mind goes blank sometimes after their first few words.

Like all sorts of things human, there is a range of findings  from definitely benign to definitely cancer, and this applies to the US findings. I would suggest trying to phone the Helpline to ask about that. They can cope with very anxious people who feel stupid! I have tested them! Have added a link below but the humans on the Helpline would be better.

They have to look at the biopsy specimen as that is the best way to identify whether the cells are normal or not. Also they test to see if hormone therapy or Herceptin would be useful if it is cancer.

When are you due to get your results?  You are still in with a chance of "You don't need to come back, you are fine" and I hope that's what you are told.

Lavender

xx

[Guest user]

Went for biopsy today and had a differe t radiologist who scared me half to death. He is saying he is leaning more towards a malignant lesion because he sees slightly irregular borders, the skin thickened , and because it is new. I drove home bawling my eyes out. The ultrasonographer said it was perfectly round, borders were good, and then he comes in with that which differed from the first radiologist who said it wasn't highly suspicious and it could go either way! Does anyone think there is a chance of it being benign or do they know from the ultrasound?

[Guest user]

I am so sorry that your Doc said that. Have you had your biopsy? They definitely just say what they think! I wonder why they biopsy if they feel they know from ultrasound.

[Guest user]

hi Lavender,
I went for my core biopsy and had a different radiologist who had a different take on thisHe says he is leaning towards malignancy but still 50 /50 how can that be? He said it had irregular margins, and skin thickening, and wasn't as bright on the US as it should be. The tech before I saw him said she saw a perfectly round lesion with good borders? I am in such turmoil and feel like It is it. I asked him if it is cancer could I expect go on to live a full life and he said "Fair" on that. What the heck does that mean. I almost got into a car accident coming home. I am so anxiety ridden I can't think straight

[Lavenderlassie]

Hallo, Scared and anxiety ridden,

You are totally normal to be feeling like this, everyone does, both the ones who get an all clear in a week or two and those who stay just a little bit longer.

The important thing is to get checked and find out the facts as they apply to you.

If your doctor was cold, that's not very nice, but honestly its better than them being so kind that you feel you can't be long for this world!

The good thing is he said it could be either way and not highly suspicious. My radiologist said this looks highly suspicious from minute one and after 5-10 minutes further looking, plus biopsy, she told me that the diagnosis was almost certainly cancer. They don't mess about, they tell you what they expect, so it sounds as if you have a good chance of waving goodbye to the clinic soon.

Meanwhile keep busy, DO NOT GOOGLE look for info from your BreastCare Nurse or this site, and hang around, you will find lots of good company here.

Lavender

xx

[Guest user]

He everyone,
I am hoping I can get some comfort and knowledge here. I found a small lump in my right breast, feels rubbery to me. Anyway, after mammo they had me do an ultrasound. The radiologist came in and told me it was not a simple cyst, it was hard and indeterminite. He was so cold! I am so scared I can't eat or sleep. He said it go either way. Said it wasn't highly suspicious and not to lose sleep over it. He offered no comfort .He said if it is something you take care of it and get on with your life.
I have biopsy Tues and am a wreck.