Anxiously waiting

[candy5]

Hi everyone,

I have posted on here before but needed t post again as I’m extremely anxious about my situation.

On 17th February, I went to my GP with a lump that I found. He found another lump and referred me to the Breast Clinic. I was seen on the Friday of that week but unfortunately the mammogram machine had broken down so I was unable to have further tests although the consultation was sure they were cysts.

I had an appointment 10 days later for my mammogram and ultrasound. I knew straight away that the radiologist had found something on the mammogram when she looked concerned and did a magnified mammogram. I had my ultrasound and several types of biopsies.

When I got home I got a call to say that they had not been able to get what they needed and I needed to have a stereoscopic mammogram. Unfortunately, there were no appointments for 3 weeks as they only performed them once per week.

Last Thursday my appointment finally came around. It was extremely traumatic. An hour of being squeezed into the mammogram with three people trying to get the right position, changing positions, plates and talking about different needles. After an hour of this they sat me up and the doctor explained that they couldn’t get to the point that they needed to as it was in a difficult position. The doctor said that they were concerned it was cancer. I was told that I would now need an MRI although this isn’t ideal due to it not being able to see somethings.

Yesterday, I called the hospital to see what was happening. I spoke to a lovely lady who was very supportive but said that an MRI hadn’t been requested and I wasn’t down for this weeks MDM. She kindly said that she would speak to her colleagues and get back to me today.

Today, the lovely lady called to say that they are unsure if they want to attempt the stereoscopic mammogram again or MRI and was going to get a second opinion with another doctor. Great I thought! The only problem is that the doctor is away on holiday for two weeks. So it will be two weeks at least until the second opinion and then another wait for either the stereoscopic mammogram or MRI, then another wait for results.

I feel so anxious with all the waiting and not knowing. I’m just beside myself. I know that they have found calcifications, so it might be nothing and maybe they are not overly concerned otherwise it would be quicker (I hope or that’s what friends say). But it could be and they won’t know until they do a biopsy. I understand why they would prefer to do a stereoscopic mammogram because that an MRI may miss the calcifications. I just don’t know if I can carry on with the waiting and not knowing. I really want to know or be able to draw a line under it all. It’s been such an anxious 5 weeks already.

Sorry, I know that there are people in worse situations than me, I just needed to talk about it. And sorry for the very long post.

Thank you for listening

[Jill1998]

That sounds like absolute torture I found it difficult enough having all my prodding and poking on one day and then waiting for 10 days for the results ! I know it’s only because they want to get the right information and in the right way but it’s so awful to be on the receiving end of that .Please don’t apologise for venting here we all understand how awful the anxious waiting is - hoping you get a clear answer on what you are dealing with soon . Best wishes Jill x

[naughty_boob]

Hi @candy5 This sounds horrible and can understand your need to vent. That’s what the forum is here for.

I had a delay nearly 2 years ago due to backlogs, I got called for a mammogram then waited 3 weeks to see the breast surgeon and had biopsy with ultrasound. The mammogram and ultrasound sized the lump differently and when the results came back as cancer. I was sent for an MRI which then found something in my other boob. They thought it was an intramammary gland but another biopsy with ultrasound found it was another primary cancer. The time from finding my lump to having my full diagnosis was about 12 weeks, I then had surgery to remove the cancer the following week. During this time I thought the cancer is growing and I’m still having tests. When I said I was worried that assured me that the cancer doesn’t grown that fast about 1cm every 6 months even the more aggressive HER2+ that I was diagnosed with.

What I am trying to say is that your feelings and frustrations are understandable and you want to know what it is, so if you need treatment you can start as soon as possible but getting the correct diagnosis is really important. Biopsy is generally the main way to say what it is and until you have had one you just won’t know for sure.

At the moment the waiting is horrendous and it’s normal for everyone who has visited a breast clinic awaiting tests and results. As one of the doctors is on holiday is there any chance you could be referred to another hospital or be seen by another doctor within the unit.

For the moment you don’t have any answers so try to distract yourself, if you can.

I hope you get an appointment soon and get the answers you need.

[JoanneN]

No need to apologise - we have all been there with the waiting at some point or another and it’s awful. After my biopsy had confirmed that I had cancer I had a procedure under local anaesthetic to remove it . I wasn’t in pain but it obviously wasn’t going well , it took twice as long as it was supposed to and they took four times as much tissue as planned and at the end the Radiologist admitted that they thought they hadn’t got it. Then it was a long wait for a check mammogram due to having to wait for a haematoma to absorb then another wait to be told that they hadn’t got it - which I already knew . I was fairly ok up to the last two weeks which felt like torture. So I sympathise very much with how how you are feeling now and I hope that you are not too sore. It doesn’t sound as though you have been referred to the BCN service though at least you seem to have made a sympathetic contact . I suspect the reasons for wanting a biopsy before an MRI are logistical as well as clinical but I don’t want to give you inaccurate information - if you contact the Breast Care Nurses on the helpline and talk it through with them ( 0808 800 6000 9am to 4pm Monday to Friday and 9am to 1pm Saturday) they might be able to explain and give you a bit more support .

Sorry that you are in this situation and sending love . Xx

[candy5]

@Jill1998 It is absolute torture. It’s hard enough to go through all the invasive tests, knowing that they have found something that is of concern and being on the cancer pathway is difficult enough. Now with all the uncertainty over the next steps and more delays when I thought I’d have results by now is really hard. I have had some good news today, I have an appointment with a doctor at the hospital next week to discuss what they already know and for me to ask questions. I know that they already have my original ultrasound biopsy results where they drained a cyst and had found blood at the back, so I should at least get these results too. Thank you for allowing me to vent and for taking the time to reply

[candy5]

@naughty_boob I am so sorry about your diagnosis and that you had such an horrendous wait too. It’s very distressing waiting, not knowing exactly what is going on.

I had some good news today, I’ve got an appointment for next week to discuss everything so far with a doctor. At my original ultrasound they drained a cyst which had blood at the back of it and biopsied other areas, so hopefully I’ll get the results of those, as well as being able to discuss what they have found and why they were not able to get to it with the last stereoscopic mammogram.

I definitely want the correct diagnosis and was feeling disappointed that they couldn’t get to that area as they had told me that an MRI might not show what they had already found. Although, after an hour of them trying I was initially relieved.

I feel more comforted now that I will be able to talk to a doctor and find out more information.

Thank you for taking the time to read, reply, let me vent and reassure me

[candy5]

@JoanneN I’m so sorry for what you have gone through. It’s horrendous not knowing but also knowing that they are concerned and the waiting for the next piece of news. Everyday, I think will they contact me? Will I hear something only to be disappointed.

I had some good news today, I’ve got an appointment for next week to discuss everything so far with a doctor. At my original ultrasound they drained a cyst which had blood at the back of it and biopsied other areas, so hopefully I’ll get the results of those, as well as being able to discuss what they have found and why they were not able to get to it with the last stereoscopic mammogram.

Should I have been referred to a BCN? I have seen a number on a letter and also around the clinic.

Thank you so much for understanding, letting me vent, for listening and taking the time to reply

[leelee1]

Hi @candy5 i think I remember seeing your previous post. I’m so sorry you have had to go through all of this.
The concern when you first get referred, then the waiting, then the agony of those mammography guided biopsies, then more waiting! I couldn’t help it, I just had tears slowly running down my face when I had mine done!

I had been called back after MRI for the additional biopsies, and it took three months for me to get the results! I guess I’m lucky in that by that time, I was having chemo for the first lot they’d found.

It may be a bit morbid, but I used the time to look at what having a second lot May/may not mean, if it would affect treatment etc.

Now you have your date, get your questions ready in case it’s the news none of us want to hear (they will likely tell you all the info they have anyway). If you like detail like me, you can get your head around terminology (HER2+/-), ER/PR+/-, node involvement etc so some of the info makes more sense - although if not, your breast nurse will guide you through it all.

Good luck and I hope you get on well next week xx

[naughty_boob]

So pleased you have a date to speak to a doctor and you can find out exactly what is going on.

Keep us updated.

[candy5]

@leelee1 thank you yes,‘I did post about the awful mammogram guided biopsy a whole hour of torture and they didn’t even begin the actual biopsy . I don’t know what I’ll be like if they decide to do it again but I’d prefer it as they have said an MRI may miss it. It’s the long long wait.

After the hospital gave me an appointment yesterday, today I got a call saying that the doctor wondered if they could do a telephone appointment rather than face to face as I still needed further tests so I agreed to this. But tonight I have received email letters cancelling the appointment. This may be just the face to face but it doesn’t say anything about a telephone consultation

I will read up a bit but also don’t want to scare myself too much when I don’t know too much. I have a whole list of questions that I need to write down so I remember them. I just wish they would keep me updated. My reports become available online on Monday and I don’t want to read anything that I can’t speak to someone about.

How are you doing after your diagnosis?

Thank you for taking the time to listen and respond

[candy5]

After the hospital gave me an appointment yesterday, today I got a call saying that the doctor wondered if they could do a telephone appointment rather than face to face as I still needed further tests. So I agreed to this. But tonight, I have received email letters cancelling the appointment. This may be just the face to face but it doesn’t say anything about a telephone consultation I’ve emailed the hospital to ask what is happening

[leelee1]

I don’t blame you for not wanting to dig too deep. What works for some is the complete opposite for others! And if you have questions after your appointment, you have a whole community of brains here to pick

Talking of appointments, I expect it’s just a case of the person cancelling the appointment either has to pass it to somebody else for rebooking, or they just need to get the slots swapped/added as a a different type (phone v f2f). It will all likely be ‘computer says no’ issues!

First thing I done after my original diagnosis was sent my OH home, then rang my boss! I knew I could be open and honest with her (rang her as a friend) without worrying what she was thinking. I think it allowed my OH to have some time to let it sink in as well.

The first few weeks I must admit I was slightly up and down… the slightest thing would set me off, then 5 mins of a good cry and was fine again. Waiting for those second results was as awful, mainly because there was the chance it was going to come back as bilateral, which thankfully it didn’t, just more in the original side. I can deal with that and don’t think I’ve cried for at least three weeks now (gosh that doesn’t sound that long writing it down!), and there’s lots more time between worrying and getting upset.

I’m in the swing and routine and chemo at the moment. Will focus on next steps when it gets nearer, which is really probably the best advise I can offer - try not to focus too much on the areas that are still to come - just focus on getting through whatever the ‘current’ challenge is, whether that be messaging us, meditation, long walks, whatever works xxx

[naughty_boob]

I hope you hear back from them soon to confirm the hospital appointment. It can be so frustrating with changes but as @leelee1 has said try to deal with one thing at a time. The waiting and not knowing is always the worst time.

Once you’ve had you telephone call you will know what is next.

[arty1]

@candy5 - I’m
Not surprised you are feeling so stressed and worried after all the waiting and uncertainty , I’d defy anyone not to feel the same way !
I’m glad you have an appointment now to see a dr to discuss the findings x

I had a similiar situation when I received my diagnosis last year - I attended clinic on July 23rd where I was told I had lots of micro calcifications and most likely had cancer , I had biopsies on the day and a few days later received a follow up appointment for ten days later which was then promptly cancelled leaving my stress levels somewhat the elevated!
When no new appointment was sent I ended up having to call the clinic and ask what was going on, to be told I had an appointment the next morning ! good job I called
I received a formal diagnosis the next day but then they dropped the stereotactic biopsy clanger on me ! So a week later I had to come back for that , and I share your horror as these really are very traumatic , and then I had to wait another ten days to finally get my diagnosis .

While you are still going through diagnosis stage it feels like everything moves in slow motion and I can honestly say I felt better once I knew exactly what was going on and treatment started . The waiting and wondering is exhausting and stressful . Hopefully you’ll get some clear answers at you appointment x

Arty1

[candy5]

Dear all,

Thank you so much for being a wonderful community of support and kindness, even when going through difficulties yourself.

I spoke to the Consultant Surgeon yesterday. They have found a 15mm area of calcifications in the left outer part of my breast, that they are concerned about and have been unable to biopsy. The Consultant wants me to have an urgent MRI scan to get another picture of what is going on. She had already ordered the scan before speaking to me

After the scan, she will see me face to face to discuss the next steps. She did say that the area would have to be biopsied. I asked about repeating the stereotactic mammogram and she said that it would be best to wait until the MRI results are in to look at the best option. She also said not to be too alarmed if I’m called back for another ultrasound after the mammogram as many women find this happens.

My original lump (17mm) was a cyst and the suspicious lump (9mm) that they biopsied the first time was benign.

So, I have a next step and feel so much better about that than the waiting and not knowing what is going to happen next. The MRI should be in the next 10 days so fingers crossed I’ll probably get anxious again after the MRI waiting for results but I’ll take the good with the bad

[naughty_boob]

Glad you feel better knowing what is happening when.

Keep us updated.

Take care🥰

[templar-1310]

hello candi5 ! i dont have cancer myself but my daughter has been diagnosed only last friday.
i am so .so very sorry to read about all your stress , worry and fear. on top of all that ,the often very long waiting times. im not telling you here now, what or what not to do… this is simply a suggestion. when our daughter was diagnosed , our biggest fear and panic was time… waiting time… so all of us did decide to look into privat health care. now that is a minefield in it self and very overwhelming. but we did find a hospital where our daughter is seen as i write this… the little i did understand so far is (and please if anyone on here has a better, or fully understanding of this,please correct me !!) that there are all sort of different plans and regulations regarding privat health care. so i only can speak specific on our own situation. circle health also works with the NHS. meaning you can use both…bouncing between the two of them… and for reducing the waiting time (as time is definitely NOT an option) we felt this was the only option. money is sadly and obviously a- if not THE biggest part of going privat. or partly privat… we are far off from having money spare but we are all coming together here now as a family and trying to get the needed money for the most important tests aso together… no idea if this will help in any way or form but i hope it may will !
i hope so very much, that you will be able to get a bit more order into all this chaos, and will somehow manage to get seen asap for at least the most important check ups… tests aso !
much love to you… stay strong and keep on fighting ! never give up hope !
T

[templar-1310]

Hello candy5 ! So nice to hear back from you! Reading your note was so very sad. And feel for you. I was about to bed( over here in DK we are an hour ahead of the UK) so i just wanted to let you know, that i did read your note. I will definitely reply properly tomorrow… i hate rushing writing , or just pop something down rushed… so please bare with me till tomorrow!
Please try to get some rest…you need strength to fight …please take good care of yourself!!
Till tomorrow…
T

[templar-1310]

at last… hello candy5 ! i did NOT forget you !!
hello. i just did re read your note to me, from yesterday- as my heads all over the place right now, with so many things crashing down on it day by day- unfortunately, re reading your note was not any less upsetting ! i feel so so very sorry for you, candy5. i find it incredibly sad HOW MANY women are on here, where not only the cancer comes often in many additional forms but on top of that overwhelming news often they have to deal- like yourself- with multiple other issues- which are ALL so very worrying. i just did say to salbert- another incredible woman on here- how helpless i feel… that all this spoken words of stay strong and we are fighting this together aso mean nothing in the end… as YOU- the women (and men ?!) on here have to face it all on your own… and that feels absolutely devestating! when we got told last frieday that our daughter has breastcancer, one of the first things from very ,very far awy coming to my mind were… why her… she dose not deserve this… but this is it… NO ONE on here ask themselve the same question and definitely NO ONE will ever deserve THIS. i have NO idea, HOW and WHERE you manage to get your strength from, to deal with all this… your diagnosis… your fear and worries, the worries regarding your parents and vice versa… financial and work related pressure and then the loss of your brother… which i believe never can heal ?! i so hope, that you have a close friend… someone you can lean on, from time to time, someone who can hold you, where you can cry and load off to… the financial side is such scary… we lived nearly 20 years in the UK. my husband is British and our 2 kids were very little when we did move ther(i met my husband outside the UK) so both of them grew up in the UK and i would not ever change any of that ! but even before we left (nearly 5 years ago) things started to go wrong for rather a while…obvioulsy we catch daily up with british news and it is so worrying and i feel for everyone who is in a financhial struggle… but as i did mentioned also… we never had money spare and my husband lost his job over a month ago… the company got bust… thankfully the company got bought out and only has a skeleton crew working there now. luckely my husband was one of the lucky ones… but our car went at the beginning of the year… motor- gone so we need a new car aso and now with our daughter… we are FAR from being in the position to get our daughter into privat care ( and i want to make MORE THAN CLEAR that i adore the NHS and their none stopable commitment… and working under these circumstances must be a nightmare… so i deeply feel for them) BUT regarding those long waiting lists aso… we simply paniced and got together and all contribute to paymens. she wont be able to have all treatment aso privat- far from it- but we least want her to get the most important things done as quick as possible… it is simply only down to speed. im sure, we will have to go down the payment plan option … and it will be tough but we definitly will take this as far as possible… this is why i thought it may could be also an option for you… as they offer payment plans and aslo you still can use the NHS. yesterday our daughter did see her consultant and came back with so much info, it was mad. for example , it looks like that our daughter will have 6 (i think you say?!) rounds of chemo therapy ( i think it was… i need to read through the summery letter properly myself but yes, ONE round would be £1.000 ! but even the consultant did say(least that is what i understood so far) that the treatment privat is exactly the same as with the NHS. so she did edvise to go with them… maybe have a look, if you may can get some very important test aso partly privat ?! but… there are soooooo many different ones… all have different roles and regulations… with some you can use both- privat and the NHS, with others that is not possible. so anyone who read this apart from candy5 please DONT take what i write as entirely correct !!! we only had our daughters diagnosis last friday… so we had to rush ourselfs to get her booked in to a privat hospital… so please do re search thorowly… its rather chaotic !
thank you also for your well wishes, regarding our daughter… is very kind of you, candy5
unfortunately i cant give you any advise regarding this damn cancer , nor regarding anything else BUT i can offer you support, as in if you need to talk, or just let off steam or want to share your worry, then PLEASE DO let hear from you…i will reply as fast as possible…
if you choose not to and we wont hear again, than i wish you loads of strength to go through this and tackle this nasty **** !!! please never give up
fighting and to hope… all the best T

[candy5]

Hi all,

I hope that you are all as well as can be.

I’m back in this awful waiting game again.

I had my MRI yesterday. I had an appointment booked for today with the consultant due to breast pain. But they cancelled that without me knowing. It was lucky that I logged on to print out the letter and saw that it had been cancelled.

The secretary told me that the consultant has booked my case for the multi disciplinary meeting on 29th April.

It feels ages away. I first saw my GP on 17th February and my hospital appointment was that week. I was ok at first but as time goes by, I get more and more anxious having these tests.

I know it’s because it’s in a difficult position and they are really trying to get answers but 2 months of tests not knowing if I have cancer is driving me insane. I read stories of women who have results in 10 days and am happy for them but wish it was me.

This isn’t likely to be the end either as the consultant said that they would make a plan on how to biopsy the area after the MRI.

Sorry I needed to let it out this morning. Just want to cry