Awaiting Results Nine Weeks Postpartum

I have never posted on a forum like this before but am beside myself with worry. Nine weeks ago I gave birth to my beautiful daughter and approximately one week in I found a lump on my right breast, which I assumed to be a blocked duct. The midwife felt it and said much the same. I followed all advice to try and shift it but a week later it hadn’t gone so I went to the GP. She had a feel and said it was quite deep and I would have to massage hard at every feed, and that I should come back if it hadn’t gone after another week.

A week later, I went to the breastfeeding clinic at my hospital, due to that and problems with a very cracked/injured nipple on the same side. Both things had started to improve somewhat, in that the nipple seemed to be healing and both my husband and I felt that the lump/swelling had reduced. The lump had initially been very tender, perhaps from massaging it so much, but this was better too. I was told it would probably continue to improve but if it didn’t I may need to get some antibiotics from my GP.

Fastforward to my six week appointment and the lump had become more prominent again, although not painful. My GP referred me to the breast clinic and I had my appointment there this Tuesday. Upon initial examination I was told it was most likely a galactocele and to go downstairs for an ultrasound. I did this, and the radiographer initially said the breast tissue looked normal. However, when she then scanned my left breast for comparison she began to look more concerned. She went back to the right breast and said that my lymph nodes were reacting to something, possible a slow burning infection. She said that she would need to do biopsies on both the lump and the lymph nodes. I hadn’t really considered the idea of anything sinister and when I asked her if that’s how the scan had looked she told me in a very solemn tone that it looked “odd” and that she wouldn’t have done biopsies if she wasn’t concerned, given the risk of a milk fistula developing.

I was sent back upstairs to the doctor who performed the initial examination and we were joined my a specialist nurse, for support, which I found a bit weird. They said they weren’t sure what the lump was, that they weren’t calling it cancer at this stage and that I should “remain optimistic... but prepare for the worst”.

I came away feeling that they hadn’t done much to reassure me and I just had a sense that bad news was looming. I called the support nurse today and asked her, pretty much, to call a spade a spade. She told me that my scan hadn’t looked normal and that if I wasn’t breastfeeding they would be saying that they thought it was cancer. However, when the consultant looked over the scan he had commented that breastfeeding can sometimes muddy the waters and therefore they would need the biopsy results to confirm diagnosis.

 

Again, I didn’t feel at all reassured by her tone and was told that I should probably prepare for the worst and have someone with me at the appointment. I just can’t believe this is happening and every time I look at my daughter I feel so upset and tearful at the thought of not being around for her growing up. I have read online that pregnancy associated cancer tends to be more aggressive and has higher rates of fatality, which just terrifies me. I went through months of trying to conceive and a previous miscarriage in order to have my daughter and this all just feels so unfair. I’m not sure what I’m asking for from anyone here - perhaps some reassurance that false positives happen on ultrasounds (particularly when breastfeeding) or perhaps some positive stories of surviving postpartum breast cancer. It all just feels so hopeless right now.

  • Hi 

    I do don’t have much to add as I think Jenny has said it all, yes there has been a spate of young new mothers receiving BC diagnosis but it is still very rare. I had lymph nodes that were “reacting to something” and had three removed - the only thing they were reacting to was an infection. So don’t read too much into this.

    I would also take comfort in the fact that the lump had reduced, I’m afraid the professionals have to do their job and make sure 100% what it is and they do have to prepare you - it’s standard practise - doesn’t mean they think you have cancer and I would take whatever the breast nurse says with a pinch of salt - the ones I’ve dealt with are drama queens. Hence why I give them a wide body swerve :)

    All you know at the moment is that there is something unusual in your breast and that they are trying to get to the bottom of it - thankfully, otherwise you would continue to fret about what this may be. Hopefully everything will be fine and you can get on with raising that baby of yours.

    please keep us updated on what they find, I’ve lots of ladies on my ‘replies’ that have been in your position and it turned out to be lots of worry over nothing x

     

  • Hi there,

    Thank you so much for your response and, despite feeling that you didn’t have much to add, I actually found your reply really helpful. I am hoping beyond all hope that this is an infection of sorts, but have questioned if this is possible given that I don’t have the usual mastitis symptoms of flu/fever, redness or pain. Yesterday my throat started to hurt and I actually found myself willing it to turn into a full blown flu and was taking my temperature hoping it would be sky high :D Sadly, no such “luck” and I can only assume that the sore throat is down to all the stress of the past week. When you had your infection did you have many other noticeable symptoms?

    I agree that it is weird that the lump seemed to go down temporarily, and this coincided with me having a short course of antibiotics for an unrelated UTI. The other thing I don’t think I’ve mentioned yet, and sorry if this is TMI, is that when I first had my daughter I had awful problems with latch, which led to a VERY sore nipple on the same side as the lump. At one point it literally had a huge wedge missing and then it started to look like someone had taken a pair of scissors and chopped the end of my nipple off :| I did show the doctor who referred me to the breast clinic and she didn’t think it looked infected, but as it has only just started to heal in the last couple of weeks I am desperately hoping that it all may be connected somehow. I did mention this idea to the radiographer but she didn’t seem convinced.

    I will definitely report back on Weds but thank you again for your support in the meantime xx

  • Hi lulermel

    Happy to help, I had no symptoms, although I was being treated for a sinus/upper respiratory infection at the time. I wouldn’t worry too much about the nipple, anyone whose breast fed has had similar problems.    Fingers crossed for you for Wednesday x

     

  • Had my results appointment today and I can’t believe i’m typing this, but I was good news! Well, it was good-ish anyway, in that no cancer cells were found in any of the biopsies. However, the results were inconclusive in that they don’t really know what has caused the lump. They’re going to repeat the biopsy just to make doubly sure that all’s okay there, and they’ve taken bloods and will do a CT scan to check my lymph nodes throughout my body. They did a physical body exam today though and couldn’t feel any inflammation. I’m also having a mammogram which i think it to look at my ducts. They were much, MUCH more positive about things today and it looks like it’s probably all breastfeeding related but they said they want to leave “no stone unturned”. I know it’s not totally over yet but the relief is immeasurable. Thank you all so much for your responses, which truly helped an enormous amount when I was in a very low and anxious place x

  • Yipppeeee!!!! I am so relieved for you love, and isn't it good that they are being so thorough......phew.....now relax.....xxxx

  •  

    Hi Lulermel,

    This is excellent news, although I'm glad to hear that your consultant is leaving "no stone unturned" and is doing further tests. It's better to do these now, rather than finding something further down the line.

    Many women have breast problems when breastfeeding, so if this is the only problem, I imagine that you are immensely relieved.

    I sincerely hope that this new batch of tests comes back clear again. Don't forget to let us know the outcome.

    Kind regards,

    Jolamine xx

  • Hi there ..

    Just want to add my high 5 for result .. we love good results on here ..  so fingers crossed for everything comming back o.k too ..

    So if all's good .. you remember this time, because then you can help other new mum's that are so so scared of tests ... and then you take life by the short and curlies ... and run with it ... and put as much life , love , and laughter in to going forward ... every day we get is a bonus ... big hug to you and your little one .. Chrissie  

  • Thank you all for your kind words and encouragement. You are right, I will absolutely have a much greater understanding and empathy for those going through similar in the future. I am also so in awe of those who have not been so lucky with their results, and the bravery that dealing with this entails.

    This morning I had the repeat biopsy, a mammogram and CT scan. I work for the NHS myself but never cease to be amazed by the care we are entitled to, which is free at the point of entry. They said they’ll discuss these test results in their MDT next Weds and then contact me. It was the same radiologist as last week and she was really nice today. She apologised for causing undue distress and explained why she was concerned last time. She said the mammogram images were inconclusive but that was always going to be likely due to breastfeeding. When she did the ultrasound she said the lump looked more reassuring than last week, and that they are just being extra cautious by repeating the biopsy. She said that following last week’s results, in her mind she is now thinking, “okay this isn’t cancer, so what is it?” and that if today’s tests don’t shed a light on that they may suggest an MRI and think about whether the lump should come out. She said that it’s not a straightforward case in that it’s not obvious what’s causing the lump, but she did say that it could all just be down to breastfeeding xx

  • Just to add to the many response - really pleased for you :)