Many breast cysts found - advice please

[whimsicalmoon]

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!

Yep, you've answered your own question - at the breast clinic they were at pains to say that every time I noticed a new lump I must get referred again, and not to think I was wasting their time. Even though I always had several noticeable lumps in each breast at any point in time. I plotted out on a drawing all the ones I could feel, then checked every few weeks for anything new, if I found a new one, noted its position, left it a week to see if it would disappear/get smaller and if not, called up the GP for a referral saying 'sorry, it's me again, I expect it's just a cyst, but can you refer me to breast clinic'.

i have many many cysts. I have done since early 30’s. I sure I have over 40. Some come and go and some hang around. I get an annual ultrasound and mammogram. If the ultrasound says they are benign then I totally train that. You should get a mammogram as that picks up earlier changes. What’s good about that is they identify anything really early if there is anything. If the ultrasound hasn’t picked up anthing. Worse case scaenario is the unlikely chance of very early very treatable changes but likely nothing at all of concern

I can't comment on the process as I'm in Australia however I have many cysts which were discovered by ultrasound which I can't feel.
I have dense breasts with big milk ducts apparently 😳
I am getting a biopsy on a cyst that has doubled in size since June. I originally felt it about March but just hoped it would go away. It's in my armpit where the breast meets arm.
My appointment is Wednesday and hopefully they will drain it during the biopsy.
It's very common and I think breast lumps just scare the shit out of us.
In terms of what to take to avoid them, I've tried pretty much everything however my dr said they'll go away when my periods stop and hormones settle down.
You're not alone ❤️

I have had them aspirated but only if growing quickly. However they can be a sign of other issues and the breast clinics are good.

What kind of other issues?

I'm a very anxious person and have terrible health anxiety, so I've been really stressed since the scan. I think it's just on top of everything else I've dealt with this year, it feels like another blow.

I'm not happy at all with how I was treated at the private clinic, and I think this is contributing to the anxiety. I got such mixed messages about whether it was something to worry about or not, and they still haven't sent through my report. The whole thing is so stressful.

Yes unfortunately you just have to wait. If you had a serious issue they would want to I see you quickly.
When the other poster said other issues they probably mean things like poor hormone clearance or a lack of iodine or something.
There's heaps of us that get them but sometimes you just do. Try not to worry too much.

I had a telephone appt yesterday and the doctor wouldn't refer me to the 2WW based on what I said. She said I'd need an in-person appointment for someone to check it, and the next one is almost two weeks away. Am I right in thinking that once I have that in-person appointment, they absolutely have to refer me under the 2WW even if they think it's "just" a cyst? The pain is getting worse, and it hurts to move my arm now.

Do you think it's hormonal? Are you close to getting your period?

Am I right in thinking that once I have that in-person appointment, they absolutely have to refer me under the 2WW even if they think it's "just" a cyst?

No, I don't think they have to but I'd be very surprised if a general practitioner would declare a breast lump to be a cyst, and the attendant risk of getting it wrong! Even at the breast clinic, where the breast surgeon has my history of continuous cysts in front of them, and does a physical examination of the cyst, they still send me for the ultrasound/mammogram 'just to be sure'. If an experienced breast surgeon can't tell by physical examination alone, a GP can't either.

I have too many cysts to count in each breast. It used to be called fibrocystic breast disease, and now it's called fibrocystic breast syndrome.

There is nothing to worry about. I have had cysts drained due to infection. My breast got hard, hot, and red, with no breast feeding. Drained and sent off the fluid. Everything always fine.

I don't know think you need to worry about anything.

You can go on Facebook and find support groups.

It's not cancer but it's good to get a mammogram as well.

I get ultrasounds every 6 months because I can't tell what I'm feeling.

Enjoy Christmas and relax! It's a benign breast disorder that affects many women.

I know it's scary but it's not dangerous. It's just hormones and luck of the draw.

You can find oils for healthy breasts or use castor oil. I find that helps.

Also of you are in your late 30's you are likely peri-menopausal so it makes sense it's showing up more now.

I've looked it up and it seems like the NHS guidance says they do have to refer you for 2WW if you're over 30 and have an unexplained breast lump, so fingers crossed it will be quick. I've had over a year of constant medical stuff going on, multiple investigations, three other 2WW referrals, scans, biopsies, on top of a bunch of other stuff like bereavements, and I'm just drained and exhausted. I thought I was finally done with it all and was hoping to start my sabbatical after Christmas and go away somewhere sunny, and now it's something else. The thought of finally getting some time off and a break was the only thing keeping me going these last few weeks, and I'm feeling extremely low now. I was extremely tempted to just do nothing and wait it out for six months, but the doctor panicked me by talking about potential problems if the cysts burst, so now I feel obliged to follow through...I'm just really hoping it's not yet another thing that goes on and on because I don't think my mental health would take it!

I'm hoping to do some extended travel next year, so I am a bit worried at the thought of infections or complications while I'm abroad on my own!

I'm a bit nervous at the thought of having a condition that means I have to keep going back and getting checked - I know at least half of women have some cysts but I was hoping it would be a case of just ignoring them or getting them drained and that would be it...I was pretty shocked to see how many!

Is there any connection between this and polycystic ovaries? I do have polycystic ovaries but not the actual syndrome. Apparently some women just have that. Is this the same, am I likely to have always had a lot of cysts? I don't think I'd have even noticed if I hadn't had some pain - my boobs don't feel much different to usual.

Another worry I have is that they won't actually feel the lump and then they won't refer me - is this something I should be concerned about? I felt like the private doctor was thinking I was paranoid because he couldn't feel anything, and then he quickly changed his tune when he saw the ultrasound screen. I know 100% that I've got a massive cyst there, and that's probably what I've been feeling, but they don't know that I know. I imagine if I'd told the GP that I knew, she still would have asked me to go in for the physical exam before getting referred, because it sounds like they can't refer without being able to describe what they've felt.

If they can't feel anything, should I just tell them I had a private scan? It's not like I've done anything wrong - I'd have saved them multiple NHS appointments if it had turned out to be nothing, like I hoped it would, but I would rather get fully checked out from scratch again without them having any preconceptions. I felt extremely rushed at my private scan and I am not fully reassured. I can feel another small lump near my armpit that I don't think was there before. My worry is that if I tell them I've been diagnosed with cysts, they won't refer to the mammogram under 2WW like they're supposed to. This is all incredibly stressful!

Hi op,
Sorry you are going through it at the moment- seems you have a lot on your plate!

Wouldn’t bother mentioning the private scan. Say you’ve got a lump, and now also a swelling in your armpit. I’d bet my salary they’d put you on a 2ww pathway.

At my local trust the breast clinic was ‘one stop’, so aspirations and biopsies were carried out there and then at clinic. You’d also be seen by a breast surgeon. It may be different where you live though. Chat with a surgeon may be helpful in terms of how to manage the condition, looking for lumps in view of all the cysts, or you could perhaps be screened more often Like a pp has said.

Your age will dictate whether you will be offered a mammogram or not with benign appearances on ultrasound.

Im sure you can still go travelling and have an amazing sabbatical.

Also I think you should complain to the private clinic as that care sounds awful and like it’s really made your anxieties worse and not better- maybe they can give you another go with someone else FOR FREE!
Best of luck!

Infections are very rare!
I've been hospitalized to have mine drained and each time been told they have never seen anything like it.
My breasts used to hurt constantly around my period. I needed different bras that were larger.
I'm 45 now and peri-menopausal which seems to have changed them.

You don't need to worry at all about traveling. I travel a lot and honestly never really thought about it.

Worst case scenario you get antibiotics somewhere.

I have endometriosis so estrogen dominant. I believe there is a connection there.

So apparently the 2WW is now a 28-day target! I purposely didn't choose the earliest face-to-face appointment (which wasn't until Tuesday next week) because I was afraid the 2WW would mean ending up with a breast clinic appointment between the 20th and the 28th, when I'm due to be away. My 2WW referrals earlier this year were very fast - I think one was two days after the referral was made. Now that it's 28 days, I see that would have been very unlikely to happen, and now I've added on 10 days before I can even get a face-to-face, and there's a good chance that'll end up cancelled. The GP I spoke to on the phone told me I'd get a face-to-face this week, but there weren't any. I wish I'd just chosen the one on the 19th now, and at least it might have got the ball rolling faster. My thinking was that I'd have been on edge over Christmas worrying that I'd get an appointment through on the 27th or something, that I wouldn't be able to get back for (without giving too much away, my parents are in a place without great transport, and getting back at short notice would be very difficult).

My mental health has absolutely crumbled, and I've ended up just sobbing this morning. Being stuck in limbo on another weeks-long waiting list was precisely what I was trying to avoid with the private scan, and now I feel like I've spent loads of money I couldn't really afford just to end up right back where I would have been, or actually in an even worse position, with more time wasted. I don't even feel reassured, because of how the doctor was acting. I feel completely stressed out.

Would anyone happen to know where this leaves me from a travel insurance standpoint? If I have an ultrasound report diagnosing the issue, will this mean I can be covered, with breast cysts as a pre-existing condition? Or will the fact I've now gone to the NHS and essentially started again negate this? I'm thinking that if I get an appointment one or two weeks ahead, then at least I might be able to go away in the meantime, but not if I can't get insurance. I do already have an annual policy but I think you're supposed to tell them if you end up on a waiting list, even after the policy started?

With all due respect OP, I think you need to breathe and get perspective.
If you have a cyst or a fibroadenoma you will be totally fine.
Don't say anything to insurance companies.
If it is more sinister and the chances are low, you will probably be okay.
The way I think about things is I take it to the worse possible scenario and then reassess.
If it's cancer then your care team will deal with that.
Go and enjoy your holiday.
Not one moment of worry is going to change anything ❤️

Just re read your original post.
It's a cyst, you will be fine.

I am the cyst queen. You do not have cancer, multiple cysts is very common, you do not need to panic, they’d only aspirate them if they’re really big and bothering you. Your wait is because you are not on the urgent pathway as you don’t have cancer. You don’t need to do anything about your holiday insurance. Cysts are benign, they’re harmless and you do not need to dwell on them

I'm pretty sure I would need to inform the insurance at a minimum, no? I think being on a waiting list invalidates your insurance, which is why I initially wanted to leave any visit to the breast clinic until after my travels, but I've mentioned it to to the GP now, so that option is out of the window. I panicked myself and thought about how stupid I would feel if I put it off for months and then I did have something serious - if I'd gone straight to my GP with this, I'd have had a mammogram, and I didn't get one at the private place. So I just want to be reassured and make sure I'm properly checked out like anyone else. I'm just not sure how the whole private scan plays in here. Since I already have a diagnosis, can I just report cysts as a pre-existing condition? Or does the fact I'd technically be waiting for more tests through the NHS invalidate that?

The last thing I want is to have any doubt or worries about the insurance - I was hoping to be able to report to them that I now have no outstanding issues or tests, and be assured that I have full coverage. I'm planning to go to the US, so I really would want to make sure there's no way they could use anything against me and not cover me.

But why would you need to get health care in America for a breast cyst?!
You won't.
Just go and don't say anything!!

I've never shared cysts with insurance. Why would you? If you had cystic acne would you report that? They are literally no big deal. You are being a bit dramatic at this point.

I can’t begin to imagine why you need to tell your insurance about breast cysts. You’re not going to need any treatment for them when you’re away I can assure you. At your age and with dense breasts an ultrasound is far more effective than a mammogram anyway so you’ve had the main thing. If a mammogram picked something up it would be something so small and early that it would be completely treatable. Anything bigger would have been seen on the ultrasound.

Er, sorry @Cantbeardarknights, but I am The Cyst Queen. One sonographer said it was the most she'd ever seen. I just have cysts. When they go, at some distance point past the menopause, I will just have nipples I suspect.

Anyway, OP, who was this private ultrasound Dr? Was it an actual breast consultant or just a general private ultrasound place? I strongly suspect his steer was so shit and unhelpful because this isn't his area of expertise. I, like the other members of the cyst Royal family on here, get v regular trips to breast clinic. If the ultrasound found cysts, that means there is no sign of cancer. In your 30s, this is what they would do at breast clinic - just another ultrasound, which will find cysts again. You don't need another appointment at all. I can tell you really feel like you need one because of the terrible advice from the sonographer/Dr. But you don't. You don't need a 2 week urgent appointment because it will just be for exactly what you just had. By all means go to the GP, but you don't have cancer and you can happily wait until Jan or Feb to be told that you have cysts again.

I'm sorry the advice you had from the private sector was so unreassuring but you don't have anything to worry about.

I have never told the travel insurers that my boobs are mostly held together with cysts. It's not a health condition! It's a feature. (Preens.)