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Anyone else had infected lymph nodes missed?

13 REPLIES 13
Jeannie
Member

Re: Anyone else had infected lymph nodes missed?

Dear Anne

I had written a reply to you but unfortunately when I pressed the submit button it didn't accept and I lost all my text. In future, I'm going to save it in a word document first as this is very annoying.

I hope things go well for you today.

You sound as if you are very rational about all that is going on. To go away for the week-end with your family and friends and not tell them, as you don't want to spoilt their time, sounds to me as if you are very much in control. This is great but don't beat yourself up if you get a "wobbly".

Keep up with the swimming and the gardening - they are both great therapies. I try to swim at least once a week. We moved house because of my misdiagnosis and have spent more time in the garden than inside the house. We had our first crop of broad beans last week and oh what a joy that was.

I was most interested in your comment about a drop-in centre for women with breast problems. I totally agree. I raised exactly that with BCC in 2007. They weren't interested. They said the best way was for GPs to remain up-to-date on breast cancer. I question how interested GPs are in keeping up-to-date in an area where they only see an average of one case per year and an area that moves at such a fast pace. I remember attending a meeting at Scottish Parliament whereby someone suggested that a GP within every Practice could specialise in breast cancer but I'm not sure if anyone is taking it forward. Whatever, I know the present system failed me and I very much want to see it improved for others.

Have a lovely week-end with your family and friends.

Jeannie

bydand
Member

Re: Anyone else had infected lymph nodes missed?

Thank you Lupin, that is so kind. I am pleased to hear your doctor listened to you and that are in remission, it also gives me hope for the future.

Will let you know how it goes. Anne xx

lupin15
Member

Re: Anyone else had infected lymph nodes missed?

Hi
Just dropped in and had to comment on this. Good luck and hope all goes well. If you are every unsure about something you have found you really must push to get it sorted...well done you. I had a low grade cancer no chemo just rads and removal of breast but my cancer returned in the back of my neck and had jumped to the other side of the body. I mention the lump as soon as i found it and my doctor was great. I am in remission and have been for 3 years this time.
GOOD LUCK and my thoughts are with you

bydand
Member

Re: Anyone else had infected lymph nodes missed?

Hi Jeannie

I think there really should be a drop in clinic for women to have their breasts checked thereby missing out the GP completely. I didn't know the statistics but they just prove that GP's are not the ones that should be making the decision to refer, particularly when they are not listening to the women who know their bodies best. I'm sure it would save money in the long run if women were diagnosed earlier. I'm so sorry you were not listened to - what is your story?

I should know more tomorrow but the lump under my arm which was pea sized six weeks ago when I first started bringing it to medics attention has got larger very quickly. Consultant says that it is an aggressive cancer and if chemo and rads did not stop it and it is growing to fast and so has probably spread. He prepared me for the worst so anything better than that will be a big bonus. He also apologised and said it was a surgical error so at least he's being straight. I have also been booked into hospital to have lump removed on Tuesday.

Thanks you for your concern it is so good to talk on here as I have told no-one until we know the full picture and don't want to wear my oh down. For some stange reason I feel remarkable calm today after being pretty weepy. The sun is shining and I'm going to tackle the garden. I find I can focus on swimming and gardening and had planned to go back to yoga very soon. As you say support is so important. We are going away for the weekend with family and friends and don't want to spoilt it by telling anyone so am going to put it all to the back of my mind until next week. So good to be able to offload here.

Thanks Anne xx

Jeannie
Member

Re: Anyone else had infected lymph nodes missed?

Dear Anne

Thanks for your response. It is astounding how many GPs make assessments on something they do not know enough about or see enough of. Both Macmillan and BCC have told me that an average GP Practice will only see approximately one breast cancer case per year. I had the idea that with 1 in 9 women getting breast cancer they would see quite a lot. This is not so. I was with a very rural practice and the GP may not have seen any for many years but she still refused to refer. It really isn't good enough.

Forgive my ignorance here but I'm rather intrigued. Should the chemo you had not stop the cancerous lymph node from spreading?

I've had difficulty getting my head round all that has happened to me. I've found yoga, alternative therapies and counselling very helpful. But above all comes support.

I wish you well.

Jeannie

bydand
Member

Re: Anyone else had infected lymph nodes missed?

Hi Jeannie

Thanks for your reply I am so sorry you have had such a difficult time. It is astounding how many GP's make an assessment of somthing that they do not know enough about instead of referring us on. As you say who knows our bodies better than us and it is time that was acknowledged! And thanks for putting me onto Janice's thread.

Unfortunately I think there is a big change in my prognosis as I have just finished chemo and rads with an infected node still in situ. If it had been removed when it was meant to be my chances of a spread would be much less as it is I have been prepared for the worst. My consultant did say it was a surgical error and he was sorry, I support it's just the luck of the draw. Just difficult to get my head around it all.

Thanks and all the best Anne xxx

Jeannie
Member

Re: Anyone else had infected lymph nodes missed?

Dear Anne

I've noticed a posting from Janice under the heading "Here I go again" - local recurrence or new primary which you may be interested in reading.

It's about high time we as women got recognition for knowing our own bodies. Whilst you have managed to get into the system after four consultations, there are some people who would not persevere, thinking the experts must be right. Like I did. I don't think any woman with breast concerns should have to fight her way into the system. Same applies once it is confirmed that you have breast cancer. We are constantly being reminded to be "breast aware" but no amount of awareness is any good if we as the women involved don't get the recognition.

Good to hear your breast surgeon said "sorry". I haven't managed that from my GPs and I doubt very much if I will. Your treatment would have been the same despite them missing a node. In my own case, my treatment and prognosis could have been very different. I have been told they are not likely to apologise for their mistakes in a case where there could be a claim against them.

I hope your MRI scan went well and you don't have to wait too long for the result.

Jeannie

rhapsodyangel
Member

Re: Anyone else had infected lymph nodes missed?

Anne - so sorry to hear that your worries were not taken seriously and you are now facing all this...:( Really hope the news later this week is better than you fear...

Theresa

bydand
Member

Re: Anyone else had infected lymph nodes missed?

Hi Jeanie and LooLoo

Thanks for your support I had a 17mm lump removed and full node clearance last September three of which were infected. Finished chemo in March and rads in May. I found another lump under my arm 6 weeks ago and finally saw my original breast surgeon last week who confirmed it was a lymph node which had been missed during surgery and the lump which was growing rapidly was probably malignant and will have caused spread. Previously discussed my concerns about lump with onc, GP (twice) and another breast consultant who said she thought it was an in growing hair and nothing sinister.

Jeannie, 4 years being misdiagnosed is awful, I don’t know what to say. At least my outcome will probably be the same because it has just taken weeks for proper diagnosis I was just so annoyed that they acted as if I was being neurotic. I do hope you are well and have a good outcome.

All the best for tomorrow LooLoo, I had a needle biopsy taken on Friday and have my MRI scan tomorrow so it looks like an anxious week waiting for results for us both. I'll be thinking of you.

Anne xx

LooLoo
Member

Re: Anyone else had infected lymph nodes missed?

Hi Anne,

Thanks for your good wishes for Tuesday. I am getting quite nervous about it now but not long to wait. I guess it will be waiting for the results that will be worst.
Like you I have a supportive OH and have not told many people about the situation I am now in.
Why does your breast surgeon think that the node is contaminated? Is it because it is enlarged or painful? How have they realised now that they missed it previously?
When do you get your biopsy results?

All the best, LooLoo x x

Jeannie
Member

Re: Anyone else had infected lymph nodes missed?

Dear Anne

I have to presume all the infected lymph nodes have been removed but who would know for sure? I was told I had clear margins which I presume means they have removed all affected nodes. I cannot see your profile to know what treatment you have had - chemo, rads etc. Should you only have one lymph node affected you would not be considered as having a very poor prognosis. I fall into the poor prognostic group with 15 cancerous lymph nodes.

I also didn't tick the boxes at GP level and was four years misdiagnosed. I had 15 lymph nodes with cancer and have had to cope with knowing I could have been caught at early stages instead of stage 3B had my GP used more than guidelines - listened to my request, acknowledged my anxiety and used her clinical acumen. It's been a tough call.

I hope the removal of your node goes well and that you have no further spread.

Jeannie

bydand
Member

Re: Anyone else had infected lymph nodes missed?

Hi LooLoo

Thanks for your reply I do hope things go well for you on Tues and result negative after all you have been through. It is so frustrating when you know something is not right but the professionals don't take it seriously. I don't think it's really sunk in for me yet and I haven't told anyone other than my oh who is being very supportive.

I had a core biopsy taken on Fri and node will be removed week after next regardless of result. I'm just trying to cling on to very small hope that it might be nothing sinister for a few more days.

All the best for your results and happy to listen if you feel like a rant any time.

Anne xx

LooLoo
Member

Re: Anyone else had infected lymph nodes missed?

I am waiting to find out at the moment!

I had a WLE and radiotherapy and 15 nodes removed - all clear. Before I started my radiotherapy I rasied a concern to BCN about a new lump in my breast, armpit side, which was causing me some discomfort. Two BCNs dismissed it as breast tissue but got chief surgeon to check as well who also dismissed it as nothing to worry about. They all said that it felt the same as my other breast. I told them I disagreed, several times, but decided I had to trust their opinion. After all, they are the experts aren't they?

When I saw my onc 3 weeks into rads and she asked how I was I said good except I am still concerned about this lump. She asked if I had had an ultrasound on it which I hadn't. She referred me immediately and my lump turned out to be a lymph node. They couldn't biopsy till after rads and then wanted to delay till 2 weeks after rads had finished. I had a needle biopsy and was told, by phone, that there were no abnormal cells found. Obviously very relieved. Went in to see doc 2 days later who asked what I had been told. When I said no abnormal cells found she explained that wasn't actually the whole picture. There were no abnormal cells found but that is because the samples taken were not regarded as sufficient. I was very upset after being told the results were good.
Surgeon suggested a core biopsy then if that was inconclusive they would remove the node. I refused and asked for the node to be removed straight away. That was over 2 weeks ago as unfortunately my surgeon was going away for 2 weeks holiday and I no longer have any faith in the chief surgeon as he had dismissed my concerns.
The stage I am at now is that I am having the node removed on Tuesday then will have a week to wait for the results. It has been a really stressful time and I am not coping well with it at all. Then I get even more distressed as I am disappointed that I am not coping.

Sorry to have rambled on so much!! I think I needed to get that off my chest.

I imagine you must feel very let down, as I do, that your concerns were not acted upon. I hope all your scans are clear and that you get a good result. I agree with all your comments about statistics rather than what you were experiencing. My cancer was small with little risk of spread so I think they just thought I was fussing over nothing. Anyway, should know whether it is a cancerous node in about 10 days.

Take care and Best Wishes to you, LooLoo x x

bydand
Member

Anyone else had infected lymph nodes missed?

Hi girls

Don't want to worry anyone as I am told my situation is very unusual but I have gone from having a good prognosis to having a very poor one overnight. The reason being they missed a contaminated lymph node when I had my op less than a year ago. My breast surgeon said sorry and I believe he meant it but the infected lymph node has probably caused spread so I am going for the MRS, scans etc next week with another op at the end and a very poor prognosis unless something amazing happens.

I wouldn't bloody mind so much but I had four consultations with professionals about my concerns - all who blew me off as being anxious - and I am a very laid back person. I was going back to work next month and now feel the whole year I have had off has been a complete waste of time. Now it seems like I might become unwell and I am going to have cope with goodness knows what all and be skint! I felt like all my medical consultations have been based on statistics - not assessing what I was experiencing. "there is a very low risk of that" therefore they won't explore more. Anyone outside of their tick box is just left aside.

Sorry girls just needed to let off steam.

Anne xx