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