Many breast cysts found - advice please

whimsicalmoon · 2023-12-07T15:51:33+00:00

Hoping for some advice and opinions here! I'm late thirties and recently noticed some pain in one breast a week or two ago and put it down to pre-period pain, which I've had before, but it didn't really go away once my period was finished. I checked my boob with my fingers, which I don't normally do, and thought I felt a lump. Of course, once I'd felt it, I knew I wouldn't be able to relax, and the earliest GP appointment I could get was 19th December. I knew Christmas would be ruined if I spent it worrying about having cancer, so I decided to go ahead and just booked a private ultrasound so I'd know either way. I had it a few days ago. The good news was I was told it definitely wasn't cancer, the bad news is that I had over 30 cysts in one breast and quite a few in the other. They told me that is a lot of cysts, and having searched around on here a bit, it seems like most women have maybe 10-12 at most, not 30. The doctor was extremely unclear with me - he told me it was nothing to worry about but also told me to get a GP referral for the breast clinic. I asked why, as obviously I was concerned he thought there was something wrong. He told me it wouldn't be an urgent referral and that it would just be about possibly draining the cysts. I would really, really rather not be stuck on yet another NHS waiting list with my life on hold unless it's really necessary (I've just spent an entire year being investigated for everything under the sun - entire year has been a miserable write-off), and I couldn't really get a straight answer out of him. He was about to go to a meeting and was really rushing me to get out. So now I have no idea what to do. Has anyone else had as many cysts as this? Is 30 a cause for concern? I asked what would cause them, and he said it was hormonal. I asked why they might need to be drained/removed and he said they could cause damage to my breast tissue if something were to hit me in the chest or something like that. Would what you do if you were me? If I were to get a 2WW referral from my GP, and I went for another scan, would they aspirate the cysts there and then if necessary, or would I be stuck waiting months? Is it common for them to be aspirated? Is it no big deal to have that done or are there side effects to consider? Has anyone had this many cysts and had them spontaneously resolve? Any advice would be great!

Wilberforce42 · 07/12/2023 16:19

In my experience they will only drain them if they're sticking up under the skin but your trust might be different. Might be good to just get in the system and see what they say.

vanillafudgecake · 07/12/2023 16:26

Didn't want to read and run but I have no real advice at the moment I'm afraid.

Wanted to say I have been to my GP this week as I've been experiencing pain/burning sensation in one of my breasts and after prodding around I can feel some lumps.

The GP checked both my breasts and said they both felt quite lumpy so I'm on the 2WW referral but my appointment has just come through and it's 5 weeks away!

Not sure if to worry or not as she did say she couldn't feel a specific lump but lots of lumps and it's more reassuring that both breasts feel the same.

I'm still a bit petrified though. I've been Googling loads and from what I found they seem to recommend draining cysts as it can be difficult to detect new lumps which could be more serious.

I'd go for the referral and get into the system for another scan if I were you, no harm in more checks.

Newlittlerescue · 07/12/2023 16:32

If they drain, they wold do it there and then, so it wouldn't be a wait. I had multiple cysts (though not that many at once) from going on the pill iny 40s, which necessitated many visits to the breast clinic under the 2WW. They only aspirated once (interestingly aspirating several at once without removing the needle from the breast.. ) and that was because they were very painful. Cysts went away once I swapped to the Mirena.

No side effects. The procedure was painful (no anaesthetic) but much les painful than the preceding mammogram with huge painful cysts!

I would get a referral under 2WW.

Original poster

whimsicalmoon · 07/12/2023 20:09

Thanks, all!

It might sound silly, but I was really, really hoping it would be over and done with today and that I'd just be reassured. I've had a whole year of health stuff and hospitals, and I'd only just got through the last of the appointments when I found the lump. I haven't been able to get full travel insurance with the ongoing investigations and had planned a sabbatical from work with lots of travel starting from January, so was hoping to be able to ring up the insurance company and finally tell them everything was sorted and be fully covered again and start a new year from scratch, with plans to look forward to, only for this to happen. I've been sobbing on and off for the past few days because I'm just so, so tired of it all.

Anyway, there's nothing I can do now - it is what it is and I'm trying to be positive. If I mention that I've found a lump, am I definitely going to be referred under the 2WW guidelines for a scan? I'm planning to go to my parents for Christmas (they're not in England)), so I'm worried that I might have already left by the time the letter comes through, or that the appointment will be for one of the days between Christmas and New Year, meaning I'll need to change travel plans and miss spending time with them. Might it be more sensible to wait until the New Year, or is that silly? That was the whole point of paying all that money for the private scan in the first place, to avoid ruining Christmas, but now my head is spinning and I don't know what to do.

It might sound silly to worry about this stuff and not just my health, but we've had so many bereavements this year, along with my ill health, I was really just looking forward to finally getting a chance to relax with loved ones over Christmas. I'm just so exhausted and confused!

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Baboutheocelot · 07/12/2023 20:22

I’ve been told that I have lots of cysts in my breasts but the impression I got from the breast clinic was that it’s not a cause for concern. I’ve been twice in the last two years for lumps which turned out to be cysts. The second time they did aspirate one but it wasn’t painful, it just stung a bit. I think they did say that it’s gets more common from your 40s.

Siezethefish · 07/12/2023 20:25

I had just one cyst at my 2WW referral and it was aspirated there and then. No pain at all.
was quite big

Newlittlerescue · 07/12/2023 20:45

If you report a lump, you should be referred under the 2WW. If you mention that you've been seen privately and diagnosed with cysts, I'm not sure when (if ever?) you'd get seen.

In terms of timing, since you know there are definitely cysts, then there is no harm in waiting I guess, to avoid messing up your Christmas plans. In my case, I was travelling about a week after I reported the lump. I explained this to my GP (we were both pretty sure it was a cyst - appeared overnight, very painful) and he held of referring me for a week, so there was no chance that I would be given an appointment while I was away (he explained that the clinic looked very dimly on people who refused an appointment date, and might not be offered another). So you could report the lump a few days before Christmas, and be pretty confident that you won't be seen until early the new year? You should be able to find the stats for being seen within 2 weeks in the breast clinic for your Trust online if you fancy doing some sleuthing!

With regard to being away when the appointment letter comes, my letters did not require a response, they just assume you will be there unless you phone to tell them you won't be, so I wouldn't be concerned about that aspect. I was phoned up for the last appointment, as they wanted to see if I could travel further to attend a clinic at a private hospital instead. So if you gave your mobile number, you could take the call when abroad anyway.

Purpleblob · 07/12/2023 20:58

Hi I have multiple cysts in both breasts. They found them when went for a two week referral as had 5cm lump which was a cyst that needed to be aspirated as was so large - the rest they left. Doctor said nothing to worry about having so many but that come back anytime I had a lump and don’t assume it is a cyst

Original poster

whimsicalmoon · 07/12/2023 21:25

Newlittlerescue · 07/12/2023 20:45

If you report a lump, you should be referred under the 2WW. If you mention that you've been seen privately and diagnosed with cysts, I'm not sure when (if ever?) you'd get seen.

In terms of timing, since you know there are definitely cysts, then there is no harm in waiting I guess, to avoid messing up your Christmas plans. In my case, I was travelling about a week after I reported the lump. I explained this to my GP (we were both pretty sure it was a cyst - appeared overnight, very painful) and he held of referring me for a week, so there was no chance that I would be given an appointment while I was away (he explained that the clinic looked very dimly on people who refused an appointment date, and might not be offered another). So you could report the lump a few days before Christmas, and be pretty confident that you won't be seen until early the new year? You should be able to find the stats for being seen within 2 weeks in the breast clinic for your Trust online if you fancy doing some sleuthing!

With regard to being away when the appointment letter comes, my letters did not require a response, they just assume you will be there unless you phone to tell them you won't be, so I wouldn't be concerned about that aspect. I was phoned up for the last appointment, as they wanted to see if I could travel further to attend a clinic at a private hospital instead. So if you gave your mobile number, you could take the call when abroad anyway.

I actually would rather start from scratch and just get a second opinion, because the more I think about this, the more I feel I don't trust the one I got a few days ago. It was just such a lot of back and forth - telling me it's not cancer and it's fine but that I should go to the breast clinic "just in case" - well, which is it? Just in case of what? Maybe I was expecting too much, but I did expect a definitive, clear answer. Now I've spent a load of money and am still essentially in the same position of being really anxious again and potentially wrecking my Christmas. Perhaps he felt he was doing me a favour by not having me pay privately for aspiration and suggesting I do it on the NHS, but he was really so unclear that I left feeling very uneasy and unsure, which is the last thing you want when you've spent a load of money to have some peace of mind!

I'm feeling really worried about the number of cysts...I wasn't at all surprised to find I had some, but I was thinking, maybe 3-5, not 30! I was trying to ask why I might have so many, and was really dismissive and seemed irritated. Maybe he felt that I was just paying for the scan and not a consultation, but the uncertainty is very stressful.

OP posts:

Original poster

whimsicalmoon · 07/12/2023 21:29

Purpleblob · 07/12/2023 20:58

Hi I have multiple cysts in both breasts. They found them when went for a two week referral as had 5cm lump which was a cyst that needed to be aspirated as was so large - the rest they left. Doctor said nothing to worry about having so many but that come back anytime I had a lump and don’t assume it is a cyst

I think I have a couple that are that big, or possibly bigger. Do you know the reasoning for it needing to be aspirated? Was it because of pain/discomfort or was there a risk of something bad happening because of it? This is what I was trying to get out of the doctor who did my ultrasound but I couldn't get a straight answer!

Did you find out how many you had or did they just say there were loads? And did your big cyst come back once it had been drained?

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Pumpy001 · 07/12/2023 21:31

I've had breat cysts since I was 16, about a year ago , they seemed to have become larger and very much more painful.

I was fast tracked under nhs to get it checked out , they found 3 and done biopsies and were benign.

Theyre still painful and a pregnancy in last 2 years enlarged the original 2 in size but I wasn't given any further options to deal with them

Namechangenamechanged · 07/12/2023 21:31

I have multiple cysts on one side - I think it’s from scarring from really bad mastitis with my first baby. I’ve had a couple of cysts drained that were annoying and painful. The radiologist did it under ultrasound guidance and said they prefer not to drain them unless absolutely necessary as they so often come back (one of mine did). I’ve been told they are nothing to worry about, they don’t increase the risk of cancer.

Original poster

whimsicalmoon · 07/12/2023 21:33

Also, would anyone happen to know if there's any way to get an earlier appointment date than the 19th? That's the earliest I could make the GP appointment. I didn't feel like this warranted 111 or any kind of urgent care, but it's actually causing me a lot of anxiety - the appointment I had really did the opposite of what I intended and has put even more worries in my head!

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Namechangenamechanged · 07/12/2023 21:35

And to answer your question about cyst coming back - I found the info online really alarming as it suggested it was a bad sign. When I went back to breast clinic for review the radiologist explained that there was nothing concerning about the cyst I had on ultrasound (they did send the fluid for routine sampling as well) and that they often come back if you fully drain them. When she redrained it she left a small amount of fluid behind and it didn’t refill.

Original poster

whimsicalmoon · 07/12/2023 21:35

Namechangenamechanged · 07/12/2023 21:31

I have multiple cysts on one side - I think it’s from scarring from really bad mastitis with my first baby. I’ve had a couple of cysts drained that were annoying and painful. The radiologist did it under ultrasound guidance and said they prefer not to drain them unless absolutely necessary as they so often come back (one of mine did). I’ve been told they are nothing to worry about, they don’t increase the risk of cancer.

Sorry if this is a stupid question, but do they come and go? The doctor seemed to be telling me they don't ever go away on their own, but I've read online that they often do. I've never had cause to research this topic before now, so it's a lot to digest!

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Namechangenamechanged · 07/12/2023 21:37

Re your wait to see a GP - I think the 19th would be fine, especially as you’ve had a reassuring scan. You could try doing an online consultation? Will they get a report from
the private scan? If not maybe send them it and the recommendation that they refer you to breast clinic.

Namechangenamechanged · 07/12/2023 21:38

And my cysts change with my cycle definitely and are more noticeable now I am approaching menopause.

Newlittlerescue · 07/12/2023 21:42

When you called your GP surgery to ask for an appointment, did you tell them it was for a breast lump? Whenever I've done that, I've got a call back the same day and they didn't need to see me, just referred me under 2WW (although this was covid times). Most recently, they had me into see the doctor the same day. This is all arranged through the receptionist - they have obviously been told that for breast lumps, you get called/seen the same day.

But I appreciate not all GP surgeries will be as accommodating.

BrokenLink · 07/12/2023 21:42

I have had multiple cysts I both breasts for the past 25 years or so. I have probably been to the breast clinic 20 times and the process has not changed in al that time. My most recent visit was only a few weeks ago. This is what I have learned. Although the ultrasound indicates you have cysts, it is not a complete investigation without a mammogram, and both tests should be reviewed by a consultant breast surgeon. It is therefore not unreasonable to ask the GP for a referral to the breast clinic.

Newlittlerescue · 07/12/2023 21:52

Agree re the comment above that you will be given a mammogram as well. I seem to remember from my research that the mammogram is the tool used to identify that you have lumps, and an ultrasound is the tool used to confirm that aforementioned lumps are cysts (as they show clear fluid under ultrasound).

In my Trust, they only give you one mammogram a year at the breast clinic, even if you are frequent flyer like me. The other visits, I get an ultrasound to confirm that the lumps I am there for, are cysts (I point to where I can feel the lump, and they scan it).

In terms of cysts coming and going - yes, mine come up, stick around for a month or so, then disappear, and a new one (in a different place) comes up.

Original poster

whimsicalmoon · 07/12/2023 22:07

Namechangenamechanged · 07/12/2023 21:37

Re your wait to see a GP - I think the 19th would be fine, especially as you’ve had a reassuring scan. You could try doing an online consultation? Will they get a report from
the private scan? If not maybe send them it and the recommendation that they refer you to breast clinic.

It is an online one, and I imagine they'd refer right away for 2WW?

I don't think they'll get the report, no. I don't remember giving them my GP details, and I don't think they'd be able to know them otherwise? What I'm definitely trying to avoid is having this hanging over me for months, because I'm at the very end of my resilience at this point. I just don't think my mental health can take anymore of the waiting and life being on hold :(

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Original poster

whimsicalmoon · 07/12/2023 22:08

Namechangenamechanged · 07/12/2023 21:38

And my cysts change with my cycle definitely and are more noticeable now I am approaching menopause.

Do you think I might have anything to worry about there? I'm only late thirties and it seems a little young for that. I should probably stop googling, as it's making me spiral and worry!

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Original poster

whimsicalmoon · 07/12/2023 22:16

Newlittlerescue · 07/12/2023 21:42

When you called your GP surgery to ask for an appointment, did you tell them it was for a breast lump? Whenever I've done that, I've got a call back the same day and they didn't need to see me, just referred me under 2WW (although this was covid times). Most recently, they had me into see the doctor the same day. This is all arranged through the receptionist - they have obviously been told that for breast lumps, you get called/seen the same day.

But I appreciate not all GP surgeries will be as accommodating.

It's an online booking system, so you don't actually speak to anyone and nobody really reads the reason for the appointment until the day of. I guess this is a weakness in the system I hadn't considered before. I think there is a support line I could try. I'm always just worried they'll think I'm a time waster, especially since I've ended up at the GP so much this year and had so many referrals!

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Original poster

whimsicalmoon · 07/12/2023 22:18

BrokenLink · 07/12/2023 21:42

I have had multiple cysts I both breasts for the past 25 years or so. I have probably been to the breast clinic 20 times and the process has not changed in al that time. My most recent visit was only a few weeks ago. This is what I have learned. Although the ultrasound indicates you have cysts, it is not a complete investigation without a mammogram, and both tests should be reviewed by a consultant breast surgeon. It is therefore not unreasonable to ask the GP for a referral to the breast clinic.

Thanks - did they ever give you a number of cysts or did they just tell you you have loads? Can the mammogram find things the ultrasound can't?

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Original poster

whimsicalmoon · 07/12/2023 22:20

Newlittlerescue · 07/12/2023 21:52

Agree re the comment above that you will be given a mammogram as well. I seem to remember from my research that the mammogram is the tool used to identify that you have lumps, and an ultrasound is the tool used to confirm that aforementioned lumps are cysts (as they show clear fluid under ultrasound).

In my Trust, they only give you one mammogram a year at the breast clinic, even if you are frequent flyer like me. The other visits, I get an ultrasound to confirm that the lumps I am there for, are cysts (I point to where I can feel the lump, and they scan it).

In terms of cysts coming and going - yes, mine come up, stick around for a month or so, then disappear, and a new one (in a different place) comes up.

Thanks! So do you just get referred under 2WW any time you feel a new cyst? Make a GP appointment and then get referred again? One of the questions I wanted to ask the doctor was how I'd know if I ever got a sinister lump if I have so many lumps already, but I guess the answer is that I'd need to check each time.

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