How assertive do I need to be?

Hi Ladies,

I think I already know the answer to this, but I’m beginning to doubt myself and just need advice or ideas on any other possible causes of my problem before I get really insistent with my various doctors.

I posted another thread few weeks ago to say that I had swelling in my breast and pain in my armpit for a few weeks. Finished rads at the end of Feb and this swelling suddenly happened around the middle of April. GP referred me back to the surgeon who did an ultrasound and declared it was a inflamed rotator cuff tendon - complete coincidence and nothing to do with the breast surgery which was WLE and SNB with 3 nodes removed November 09.

Saw my GP again two weeks ago with an even more swollen breast and he said he wasn’t convinced about the tendon diagnosis so wanted me to see the onc again. I asked my GP about truncal lymphoedema and gave him a printout of the Step Up Speak Out information, but he glanced at it quickly and said it couldn’t be that or it would have happened straight after the surgery. I didn’t want to fall out with him as he’s been brilliant support all through my treatment so I thought I’d wait to see what the onc said.

Saw the onc yesterday and he dismissed the tendon idea and said it was fluid retention and I have some fibrosis around the lymph node scar which is probably causing a blockage which should resolve itself in time. I’m seeing him again in a couple of weeks following a bone scan for other aches and pains. Is there anything else these symptoms could be - such as ‘innocent’ fluid retention? Could he be right and it will resolve itself in time?

What I’m really worried about is that we’re going on holiday at the end of August and will be on a 9 hour flight. If this is truncal lymphoedema and I don’t take any precautions for the flight, what might happen?

Thanks for reading this far and for any insight/advice you can give.

E xx

Be very assertive and demand to see a Lymphoedema specialist!
If you ask for a referral he cannot refuse your request without coming up with some very good reasons.
What about your surgeon? Can’t you see him or her? They are the ones best equipped to spot this not GPS or oncs.
I had a lot of truncal swelling after my fist mx which has subsided (2 years later). I have a compression sleeve for my arm and am always careful to wear bras that do not create a tourniquet effect around my chest because that triggers swelling.
If only Bahons2 were here she would be the first to advise you on this. I think she would say that if lymphoedema is suspected then it needs attention immediately because it is better to catch it earlier rather than later.
If you are worried about the flight you can buy compression bras online - but you really need to be fitted for them by a proper lymph nurse.
Good luck.

Be VERY assertive !!!

This is when Bahons2 will be so much missed on here with all her wonderful advice and research.

It sounds to me, being a non-medical person, but having lymphoedema, that it could well be that and the sooner it’s looked at the better.

Good luck

Hi Elsk,

Your BCN is the one to contact. She may have done some training in Lymphoedema but if not she can refer you on. I had great difficulty getting to an expert and had to be quite firm in the end.


Hi Elsk
Just to agree with the other ladies-if you are concerned I would call the BCN to ask for advice/ referral. If it isn’t lymphoedema then great, if it is you can get the right treatment early. My arm lymphoedema was caught early which I think has been much better long term.
I recently worried that it had spread to the trunk following surgery, and the lymphoedema nurse was able to discuss my symptoms through over the phone. It was just post-surgery swelling which took a while to settle, but she was great and told me what to look out for and when to ask for advice, which put my mind at rest. There is a long wait for referrals at my clinic, so that telephone support was very useful.
I hope you get the support you need, best of luck.
C xx

VERY VERY assertive is what you need to be ! I had a fight to get a referal from either my bcn,who told me it must be rads damage,and a gp who told me I has mastitis ! However, I knew someting wasn’t right and got my referal only to be told I had lymphoedema in breast arm and trunk !
I hate to think how bad it would have got if I had listened to some so called health professionals. The earlier you get seen the better, I was 10 weeks post rads when mine kicked off and I only had a WLE and SNB,so wasn’t a typical candidate for it.
The good news is I have an excellent lymphoedema nurse who is worth her weight in gold and trying to do something about the lack of interest in our condition,it is a total pain and I just don’t understand why it isn’t taken more seriously. I have just returned from a holiday in USA ,had 90+ temperature and my arm behaved itself thank goodness.
Good luck with fighting this fight,make yourself heard and get that referal.

Sandra x

My lymph nurse gave me a little card to carry which explains that I have lymphoedema and instructs other medics what to do in the event of infection, injury etc. I was also given a precautionary prescription of antibiotics to keep at home in case of infection. She told me to never travel without them.
Good luck!

Yes, and you might find it’s the BCN who tries to block you or reassure you everything is normal (and how many other people are showing you theirs to compare?!) when you know darn well it isn’t right. Be as assertive as you need to be, and then some.

Blimey, being assertive is really hard work! I’m now convinced there is some kind of conspiracy going on with lymphoedema. It is obviously some shameful condition that no-one wants to acknowledge.

I got my GP to admit that it is lymphoedema that I have, but he insisted that it is not a problem unless it is in the arm as there are plenty of other drainage channels from the breast. I didn’t want to fall out with him so I wimped out and came away without a referral.

I called our local lymphoedema clinic directly and spoke to a very helpful nurse who assured me that breast lymphoedema will cause a problem if left untreated and I need a referral to their clinic asap. Suggested I contact the BCNs - although I haven’t had their help at all before now as my treatment was private. I have had a response from them to say I need my GP or consultant or oncologist to refer me - none of whom think that I have a problem!

I will be seeing the onc again soon as I’m having a bone scan tomorrow. I’ll take my husband with me to lay down the law. He says he won’t take no for an answer even if I am too tired to argue.

Thank you all for your responses and support.

This is so frustrating - I feel like crying.

E x

Your story sounds very similar to mine. I developed lymphodema in my left hand because of having to have blood taken from it as the veins in my left arm are no good after all the chemo (I have a right mastectomy) I saw my GP in September of last year after having a swollen hand for the previous 6 months and am still waiting on information or a referal from her. When I went to my surgical check up I spoke with the healthcare assistant while I was waiting and then saw the BC nurse and the surgeon who did the mastectomy and explained the problem . They were both unconvinced it was lymphodema because they said that you only developed lymphodema in the quadrant of the surgery. After they had left me I spoke with the healthcare assistant again expressing my disgust and feeling of frustration at not being able to get anywhere. When I got home I had a message on my answephone from the healthcare assistant who said she had spoken with the consultant after I had left and he was sending off a referal for me to the lymph clinic.
Since then I have seen the lymphodema nurse at the clinic who confirmed it was lymphodema in my hand and also in my upper right arm and on my trunk behind the right arm. So I now have a glove to wear on the hand and a sleeve to wear when I am doing anything strenuous with my right arm (I am right handed)
Please persevere with asking. You may have to insist but it is your right to have treatment. Cancer is a sh***y disease without being uncomfortable in life afterwards.

Margaret C

Hi Elsk
Just wanted to send some support and say sorry to hear how sh***y it is for you at the moment. You are right, it is bloody hard work having to be so assertive to get listened to. It must feel as though you are banging your head against a brick wall.

Good that your husband is going with you-sometimes its good to have someone else there to take up the reigns when we are just beaten down by it all, isn’t it. I have had such a different experience from my BCN that I assumed that was the first port of call for everyone-really surprised to hear that they won’t refer you.The lymphoedema nurse has told me about health professionals who just don’t recognise or understand lymphoedema, how disappointing that you are encountering this.

Very best wishes for tomorrow and that laying down the law-I really hope that once you do actually get to see the lymphoedema specialist you will get what you need from them.

Take care

Hi Elsk

Can’t add to the great advice that you have already been given, just sorry that your are going through this and pleased you are taking you oh for support tomorrow.

Just to echo what msmolly said - ask for some precautionary anti biotics from GP before you go on hols. Mine prescribed them no problem and it was a weight off my mind that there were there if I needed them.

Be strong and get the support you need tomorrow - what you deserve!!

Love Anne x x

Hi All,

A breakthrough at last! The BCN that I contacted emailed me yesterday afternoon to say that she had spoken to my onc who has agreed a referral. She faxed the referral yesterday and I should hear from the lymphoedema clinic very soon with an appointment.

Thank you all so much again - I really needed your endorsement that I’m doing the right thing to push for this. Its so easy to doubt yourself, but I know this is not normal for me.

E x

Hi E, sooooo glad that you have now got your referal,and yup you are right re the conspiracy theory with lymphoedema. It is something that really annoys me ! We are lucky that we have found this forum and can get help,advice and support from each other but how many other women are out there just don’t have the knowledge that we have gleaned off each other and put up with health professionals who really havn’t a clue what they are talking about.

Your gp wants to try having lymphoedema and then they wouldn’t be saying it’s not a problem ! I would suggest that you unload how you have been treated to your lymphoedema specialist especially how difficult and obstructive others have been,I certainly did and it has helped in my area to push through a service that all breastcancer cases are seen by a lymphoedema nurse 6 weeks after surgery and there is just a lot more info out there and a contact if problems do occur. At the end of the day this is something that is so much better managed if treated sooner rather than later and we shouldn’t have to accept any second class treatment especially as we have been through so much already .
Good luck with it all and hope things get easier for you than they have been.

Sandra x

this posting really makes me mad ,as if its not enough we have to go through all the treatments that actually leave you with lymphodemia we get fobbed off by the very professionals who are supposed to help! i had the same problems as you at the beginning ,i had left side mast with lymphnode removal and the lymphodemia started almost straight away. due to the wait for referalls (gp just wasnt interested ) it had spread to my breast scar and was really uncomfortable ,i now wear a glove and sleeve combined and used to wear a very tight bra type garment which thankfully i dont wear too often now ,i agree with others not enough is done for us who suffer this problems after surgery .and yes i do wish bahons was still here she really was our champion .hope you get it sorted soon as air travel can affect it badly .x

Hi Ladies,

Just to let you know I had my appointment and assessment at the Lymphoedema Clinic yesterday and I do have Lymphoedema in my breast. Thankfully it is still mild and is not in my arm. The treatment consists of self massage to move the lymph fluid down to my groin to disperse and after just 10 minutes of that yesterday under supervision, there was a visible difference.

I am attending an information session this Friday and have a follow up appointment later in August to be measured for a sleeve before we go on a long flight on holiday at the end of August. I was also shown exactly how to moisturise my skin e.g. always smoothing the cream in upward strokes on my arms - which I haven’t read anywhere in the leaflets I was given before surgery.

I also saw my onc last night for the results of the bone scan which were clear (thankfully) and he spent most of the appointment telling me how he didn’t believe anything could be done for breast lymphoedema and he disagreed with the sleeve as a precaution for flying as it wasn’t necessary and would be very uncomfortable. It did make me think that he really wasn’t happy with me questioning his judgement and also that the lack of awareness and even open-mindedness about Lymphoedema is absolutely woeful!

Ho hum - I now have the result that I needed - proper assessment and treatment, but what a struggle its been!

E xx

Hi Esk

So pleased that at last you got the assessment and appointment at last. What a disgrace it took such a battle and that your onc still disputes the assessment but it’s good you will have your sleeve ready for your flight and holiday. Good for you being so assertive.

Great result on bone scan.

All the best Anne x

Result that you got your assessment Esk but omg what an attitude from your onc ! Jeez, well,speaking as a lymphoedema sufferer which your onc clearly is not, I can tell you if I didn’t self massage and have regular sessions of MLD it would just be a big hard painful lump of tissue giving me a whole lot of grief and be very uncomfortable to say the least.So it certainly helps me ! As for wearing a sleeve on a flight,am sure all lymphoedema specialists will tell you that it is standard pracice due to the change in cabin pressure affecting your arm and the compression of your sleeve just keeps it all under control. I only have it mildly in my arm but was given a next strength up compression for my recent flight to USA.Worked for me as I didn’t have any problems at all and it certainly wasn’t uncomfortable wearing it for the flight.
I have been given a different design of sleeve from the original one,now have a softer material and it has something akin to what you find in hold up stockings at the top of it,also is a better colour to the hideous one I was first issued with which had to hook under your bra strap and was very uncomfortable.
Good luck with your appointment and hope you have a great holiday.

Sandra x

Hi elsk

SO pleased that you have seen the lymphoedema specialsist, and will be getting what you need-and also shows what you knew all along- to trust your judgement- good for you for keeping going with it, even when it became such a struggle. Good to hear bone scan clear.

Am speechless about your onc really, disheartening to hear about his treatment of you, and his lack of awareness about something so significant and widespread after bc. Like Sandra says the MLD and sleeve has made a huge difference to me. I’m surprised at his denial, there’s a wealth of evidence and research these days…no excuse for it really.

All the best for the appointment, and hope you have a brilliant holiday.
C xx

Thank you all so much for your support and encouragement. I would not have had the courage to stand up for myself without your endorsement that it was not a fuss about nothing. It just shows how we need to be informed to be able to make our own judgements to help ourselves and these forums play an invaluable role in so many ways.

E xx