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21

Hm. I’ve had a mixture of great care and worrying indifference.

The breast care nurses are great at the RVI BUT are so busy that they find it hard to respond to phone calls and emails.

The last scan I had I felt was very thorough BUT I had worried for MONTHS about a 2nd lump and had discussed going private for a scan before it was agreed that they’d do another ultrasound. When they did it was really thorough AND the consultant offered to biopsy it for me even though the scan was clear.

I had a 6 week wait for surgery even though I had a large grade 3 lump which was invasive and fast growing. My op was very quick tho and I had no pain afterwards.

When I developed a large seroma, I was seen the same day and had it drained.

I agree that you have to be assertive but at times feel that the healthcare professionals don’t like patients having opinions about what treatment they want and need.

Ultimately, a lot of what we need isn’t for our body but for our minds. But what price good health, physical AND mental?

22

I agree with Jo90 when she says ". . . at times feel that the healthcare professionals don’t like patients having opinions about what treatment they want and need. "

Some doctors do feel threatened by informed and articulate patients, especially when it comes to something like cancer as I think they feel we tend to react to everything from an emotional standpoint and that colours *all* our reactions to our treatment. On occasion I have found myself wanting to say “I’ve had my breast removed, not my brain!” (Sadly had to say that a lot to people outside the medical profession too. :frowning: )

I have a rare medical condition with a complicated history and treatment on top of having bc and I am very lucky in that my GP allows me a big say in the treatment and management of it. It was therefore quite a culture shock to find myself unable to voice opinions about my bc treatments that were taken seriously, along with arbitrarily made decisions about changing the drug regime for the underlying problem, especially when it was quite clear that I understood more of the science of it than the medical professionals in front of me!

This left me at times feeling quite worried about the way the bc was going to dealt with. Although on the whole I have to say that my care has been nothing short of wonderful in terms of nursing and the surgeon made a truly excellent job of the actual mx and was patient, kind and understanding when it came to dealing with the aftershock of it all. But I do get frustrated with how it seems that I can different answers to quite important questions from doctors who are all supposed to be on the same team and have weekly case meetings to discuss their patients.

I think there is a lot to be said for being assertive as long as you understand that not all doctors feel comfortable with it, but patients have rights to a certain standard of care *and* to be properly informed about how that care will be given.

It pays to do your research if only so that you understand better what the doctors are telling you and never, ever be afraid to ask them to explain something more than once if you don’t understand it. It doesn’t make the fear of having cancer go away but it sure as hell makes you feel like you have some say in your future.

23

Hi All,

Am not sure if this is the right place to write this but it has been playing on my mind since my Op on Xmas Eve & because of it being Xmas everyone who has asked how my Op went I have just said ok as not wanted to put a downer on anyone else’s Xmas.

I was Dx 2nd December & booked in for WLE/SNB on Xmas Eve, my treatment at BCC & upon DX was brilliant, I was introduced to my surgeon who happened to be the husband of the Doctor that DX me & i was informed by just about everyone that my surgeon was indeed one of the best & I was in the very best hands, in fact some of the nursing staff went as far to say that if they ever required breast surgery it would indeed be him that they would want, the reassurance received was fantastic as i was extremely nervous.

On the morning of my Op I arrived at 7 am & was informed that i was 2nd on theatre list & was sat in a small room for an hour on my own, i was then asked if i could go back & sit in the waiting area so that they could use room for another lady, eventually i was called to come get a gown on & taken to another waiting area to wait to be called down for surgery. Whilst sat there for approx an hour with about 12 other ladies all in for their carpal tunnel surgery the nurse came in & advised me that I had been bumped down the list due to an emergency (no problem with this at all) she then came back 20 mins later & said that I would now be going at previous time as they had changed my theatre it suddenly occurred to me & the rest of the waiting room who were listening that if my theatre had changed had also my surgeon so I asked & was told rather flippantly, yes thats right but its no big deal our other Breast Surgeon is very good too so dont worry, great now everyone knows why i am in :frowning:

I feel embarrassed to say but i fought to not cry, so many things were going through my mind for example did the new surgeon know what the other surgeon had in mind for me did they know my fear of being put to sleep etc, etc ? ? All i wanted to do was ask if i could cancel, go home & wait for another appointment where my original consultant would be available, the man who for the past 2 weeks had reassured me, answered any questions with patience, squeezed my hand when the tears had come but felt in a room full of strangers who were not really aware of what i was going through it all sounded rather pathetic, as it turned out i could give the situation no more time & was walked down to theatre (in tears) where i have to say the Theatre staff on learning of my anxiety did everything to reassure & the new surgeon came out & introduced himself.

Roll forward 2 hours back on day surgey ward where i woke to a nurse putting BP cuff on bad arm, managed to inform her of this to which she giggled & said “silly me” & then proceeded to tell me that it was now 1 pm & i arrived into recovery at 11.05 so as long as i ate a piece of toast i could go home as i ticked all the boxes of what i needed to do in order to be released, she then went back to the Xmas Party that was being held on the unit for the staff, lots of laughing & singing (not that i am against people celebrating Xmas or anything else, just hard to listen to when you feel so low) I still felt very groggy & had a visit from the physio, i dont even remember what she said as i kept drifting off to sleep & the paper with the exercises on the nurses threw away before i woke & had to be rescued from the bin, it was at this point i asked another nurse why i felt so sleepy
& could she check the time of arrival in recovery room as i had been told 11.05 yet i was pretty certain that i hadnt gone down to theatre till 10.30,she checked & advised me that I hadnt infact arrived into recovery until 12.15 & would not be able to go home for another hour or so,I asked this nurse if she knew if all that was supposed to be done had been done as was aware that i had no blueness around breast just 2 cuts & she answered your colour does look ok so maybe they didnt do it (SNB), i asked why & if she could find out but she was unable to help, so am now worried as i feel like i dont know what has been done to me.

Eventually i was informed that my husband was on his way to collect me & when he arrived he helped me dress & then as we left we searched the unit for a staff member to enquire about pain relief, dressings etc but to no avail, it seemed everyone had left which was quite worrying as there were still 2 woman on the ward asleep.

Apologies if this seems one long rambling disjointed account but I just feel totally shell shocked & very uncared for, I am not either a negative person or a complainer & i wish at times i had the ability to shout louder but the one thing that i am sure of is that i did not & have not received the after care that i am surely entitled to & as i dont have my results appointment till January could anyone advise me how i can find out exactly what was done to me on Xmas Eve if only to put my mind at rest.

Thank you for reading

Sarah.x

24

Hi Sarah,

I’m sorry to read that you’ve had such a worrying time. Unfortunately due to the holiday period our helpline isn’t open until Wednesday, but I would suggest you give them a ring on Wednesday if you haven’t managed to get any answers from the hospital where you had your surgery. I’ve copied for you below the opening times of our helpline for your information.

Tuesday 28 December – closed
Wednesday 29 December – open normal working hours 9-5
Thursday 30 December – open normal working hours 9-5
Friday 31 December – open 9am – 2pm

Monday 03 January – closed
Our regular helpline hours are:
Monday - Friday, 9am - 5pm
Saturday, 9am - 2pm
Our helpline is a free and confidential service. Staffed by experienced nurses and specially trained workers with a personal or professional experience of breast cancer, we offer information and support on any aspect of breast cancer or breast health. The helpline team can also tell you about services inside and outside Breast Cancer Care and help you make informed choices.

There is also the Macmillan helpline which you may like to try for some support on this, their number is 0808 8080 000 they may be open at times when BCC’s helpline is closed.

I hope this helps. Take good care,
Jo, Facilitator

25

Hello Sarah

That is appalling! Contact the PALS people at your hospital and they will help you sort it…I had a similar situation and they were brilliant!!!

take care xx

26

Hi Jo,

Thank you for replying, am hoping some of the ladies/men on here catch the thread & may be able to respond, although i feel the thread title is a lil confusing.

Many Thanks

Sarah.x

27

Sarah just read this and its gisgusting. My experience wasnt half as horrific but wasnt perfect either. My ward was day surgery and wasnt allocated to people in similar positions. I felt the staff were there to see to my physical needs but NOT my emotional ones. No one ever came to talk to me about how the op had gone or ask how i was coping. I had a MX and ANC- went in monday and left wed. I was never seen by a BCN on the ward etc etc. I informed BCN of the experience who said she would inform the ward staff how i felt. However in your case i would do this but would also file a formal complaint. During my stay in hospital i saw a nurse do BP on the wrong arm on an elderly lady who had had a mastectomy. That evening that lady nearly had to go to theatre due to her drain not working and experiencing a haematoma. Talk about your life in their hands!!

So sorry your experience wasnt good. You do deserve better. XX

28

Hi Ladies,

Thank you for taking the time to read & reply, i feel so much better for being able to write it down & tell someone as it was really getting me down.

I am going to contact Pals on Wednesday & get it dealt with, I will also contact my BCN & at least try & find out what procedure I have had done & go to local minor injuries unit tomorrow & get some dressings as i am sure i will start to feel a little better just for having a clean dry dressing put on.

Many Thanks to you both again

Sarah XX

29

Good luck Sarah let us know what the outcome is. XX

30

Since Easter 2009, I have been undergoing treatment for advanced inflammatory breast cancer which has spread to my bones (spine, skull, ribs, sternum, pelvis) and lymph nodes. I was therefore not very impressed to receive a letter form the NHS inviting me for routine mammogram screening for early detection of breast cancer. The letter enclosed a booklet explaining the advantages of having the test and how important it was to be detected early on…

Perhaps I’m over-sensitive (particulalrly since I DID go to GP & then for mammogram a year before & was told it was a cyst & to ignore it…)but wonder how simple would it have been to just screen OUT those patients who already have the condition screening is being suggested for and avoid a) waste of administrative time and money and b) distress for folk such as me…

31

Hi, I’m also stage 4 with mets in the bone, but I still have a yearly mammogram on my remaining breast.
This is because you can still get a new primary in the remaining breast, and my Oncologist is of the view that removal of the primary significantly improves survival. My oncologist also believes that localised treatment is a valuable addition to systemic treatment, so if they discovered a secondary in the remaining breast, they would attempt to remove it.

32

Haxted I had the same experience, as I was 48+ when diagnosed and when I telephoned to politely decline my screening invite at 50, I did ask about extracting us “early participants”, I was told it wasn’t yet possible because the screening invites go out from some national centre, whereas once you are in BC treatment that is all local and that info doesn’t go onto the national records.

But now with all the new electronic records stuff - which I think are good for those of us who travel a fair bit and who are just as likely to end in an A&E far from home as in the local hospital where we live, although there are issues about data security and confidentiality - maybe they can try again. It shouldn’t be that hard.

Also a lot of these mailshots are prepared quite a while in advance, so it’s a bit like when I had difficulty unsubscribing from the Radio-Times after mum died, although I phoned and said I didn’t think she was sat watching telly, whatever else she was doing…

33

Hi i tried to post a new thread but it won’t let me!
This is for the Moderators please? I have asked my doctor for a 2nd opinion at the Royal Marsden…i am in Cheshire…she has told me she has asked for PCT funding for this? and if she doen’t get it …I will HAVE to pay for it? surely this cannot be true? Or is it possible she has not had to do this before?
I have a rare breast cancer that is now in the lungs and ALL treatment has been delayed due to infected mx…possibly caused by being drained 3 times …drain removed to soon? or being tatooed on an already ‘inflamed’ wound?
Dulcie

34

Hii friends i new on the breastcancercare.org.uk… i think this post would helps to gain and share some information regarding to the breast cancer…

thanks to all

35

Hi surender
Welcome to the BCC forums, please feel free to post for further support and help here from your fellow users and Breast Cancer Care, here’s a link to more support ideas:

breastcancercare.org.uk/breast-cancer-services

Take care
Lucy BCC