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URGENT - time running out ...Wednesday 5th February 2019 I go to see doctor as concerned about slight seepage & crusting on left nipple.
Referred via "2 week emergency referral" to local hospital.
Attend first hospital appointment on Wednesday 20th February 2019. Tests done: mammogram on both breasts, x-ray, scan on affected breast (right hand side).
A week later on Friday 1st March return to hospital for results.
Told it is definitely cancer, aggressive, tumour is less than 1cm long, booked in for breast op on 7th March, my decision to go for local removal or full mastectomy. Assigned a cancer nurse but she is on holiday at the time. Given her name an number to take away.Decide to go for full mastectomy after talking through with friends and family. No reply when phoning cancer nurse.
Mastectomy op done on Thursday 7th March, all goes very well, overnight stay, recovery good, no pain, arm now fully functioning. Still no sign of my assigned cancer nurse.Follow up appointment with consultant for post-op results cancelled as not all test results returned in time for multidisciplinary team meeting. Then consultant is on holiday for a week.Follow up appointment finally made on Friday 5th April.
The tumour was not 1cm but 7.3cm. Only one lymph node affected and apparently a discrepancy between pathology report and team report, pathology report said extra capsular cells detected outside node. Consultant advises second op to remove remaining lymph glands under arm just on case. Met assigned cancer nurse for first time at this appointment, but there was no discussion with her after seeing the consultant. Instead she hands me a charity goody bag - very nice - but she legs it off down the hospital corridor as fast as you like. If I spoke to her for more than 10 seconds that would be an exaggeration I have been for the pre op assessment for lymph node removal last Friday 12th April.Managed to see the other cancer nurse - not assigned to me - who I met previously and was covering for her colleague. She is lovely. I'd asked at the check in desk and she just happened to be there at the same time so went and had a brief discussion in her room.Mentioned that I am now concerned about the other breast as the nipple is occasionally turning inwards now which is not a good sign. She said to mention it to consultant when I go in for lymph node operation this Thursday 18th April, but that it is best to take things one step at a time and the operation comes first. She said If necessary a full scan may follow at some stage after this lymph op. She then had to go as she had to be with someone else on an appointment so there you go, back home and time to think and have more questions that need answers.I am going crazy here. How come the initial scans showed 1cm tumour and two weeks later under the knife it turns out to be 7.3cm tumour. And why wasn't anything picked up on my other breast when I was in for the original tests? And if it is showing external signs now what is underneath and how fast is it growing? When will I get a scan? Is this an indication that the cancer has already jumped ship, or there are cancer cells elsewhere? What does a full scan do and can it pick up cancers elsewhere? If so why do I have to wait until after the lymph operation and then recovery and healing before I can have a scan? If the cancer in left breast is the same aggressive cancer as in the other - 1cm to 7.3 cm in 2 weeks! - doesn't it need sorting sooner rather than later?!!
Looks like it will be more & more weeks down the line before anything is done, and lready 6 weeks down the line from a full mastectomy and nowhere near any follow up treatment (chemo, radiotherapy etc.). Feel like I am waiting for an eternity to find out the state of play. Worried sick naturally, but just wondering if it's worth paying privately to have full scan now rather than later so I get to know earlier what I'm up against. Can't really afford it but will do it if it helps speed things up, you only have one life!Medically speaking is this something you can do in my situation, or is this just not the way that treatment for breast cancer - or any cancer - is approached?
It sounds like you might need to get on the phone to your BCN until you get some answers. The waiting for things to happen is awful and it can at times feel like nobody is fighting your corner but you need to give them a chase so that you get some answers or at least get things moving.
If I can offer any reassurance at all...my tumour was originally seen on a mammogram and ultrasound as 11/12mm, following my mastectomy the actual tumour was measured at 60mm along with a further 90mm area of DCIS. The explanation I was given was that the scans are imperfect at picking up the exact size depending on the position of the tumour and it hadn't grown that big in the month that I was waiting for surgery. I then waited another nearly 8 weeks before starting chemo- partly my choice as I wanted to get the Christmas holidays out of the way first but my wound hadn't healed sufficiently for chemo to start. As it was I had a few issues with wound healing during chemo as chemo slows this process down. I was advised by my oncologist that chemo should ideally start within 8 weeks of surgery and I was only just within this timeframe.
I think (only my opinion) that the best thing you can do is chase your BCN as that is their role. If you are not getting anywhere with the BCN assigned to you, please speak to one of the others until you do get some answers. It is ,after all, their job!
Thanks so much for replying.I have just left a phone message for the cancer nurses at the hospital asking if I can speak to one of them, or preferably to the consultant surgeon. Now waiting for a reply (I hope!).A friend has just told me to "get onto them" and that consultants are usually earning somewhere in the region of £100k, so I should be making him earn it by getting answers to my questions! lol If I have this lymph node op on Thursday it will take 3-5 weeks to heal - that much I do know!That means it will be a 9-12 weeks from the date of the original mastectomy before chemo is started.
You're so right about this waiting game, I guess we're all in the same boat there!
Crikey, reading your post you really have been through the mill emotionally with all this, let alone having been diagnosed with cancer!
As has been said, the increase in size from 1cm - 7.3cm doesn't mean that it's grown in that 2 weeks but that the scanning system may not have been accurate in the first place. Aggressive means grade 3 growth. I had my scan in June 2017 and was told 15mm tumour and approximately 5cm of DCIS. (I later found out the tumour was grade 2 and the DCIS was grade 3). I had my operation to remove the tumour and DCIS in July and the DCIS was overall 5.4cm. So you can see that it hadn't really grown in over a month despite being grade 3.
It seems pretty rubbish that the scans are so different from the actual, but it may have been 'hiding' front to back maybe? and very difficult for the scans to pick up. Please try and be reassured that the grade 3 doesn't grow 'overnight' so to speak.
I didn't need chemo. due to not having lymph nodes affected, but I wasn't able to start radio therapy until my breast had healed - which was October - a full 4 months after my diagnosis.
Chemo and radio are the belts and braces to your treatment - once it's cut out then you know the cancer has gone from the breast which you have had the mastectomy- the lymph node removal will also be an extra safety net to prevent any spread - so in 2 days time that will be done as well.
The full body scan does detect if cancer has spread, but the lymph node removal was in their words "just in case", rather than "we must have them out immediately" type thing The lymph node removal being done in 2 days time is another security measure.
I do think your hospital has been appalling in the emotional support that they have given you with the lack of your BC nurse, but it sounds as if the rest of the treatment is in line with normal - sometimes things do change (albeit that was a huge change) from diagnosis to actually cutting the cancer out.
The other BC nurse suggested you mention at your lymph node operation about your other breast. I would have thought the surgeon would be tied up with other operations/then sorting you out with the lymph nodes rather than be around to start investigation your other breast. (from what I remember, I had a 2 minute chat with my surgeon at my lumpectomy/Sentinel node biopsy and whoosh he was gone!). But it is another option to try before your operation to at least try and ask the question.
As already said - go back to your BC nurse. No answer or reply?, ring your oncologist - not putting you through? Go to your GP and make a fuss there as your GP might be able to get through to the hospital for you, to get that full body scan booked. I can 100% understand how worried you must be about the other breast as the other one had over 6cm of tumour hiding, so just keep pushing for the full body scan until your mind is put at rest. Yes they want the operation done as this is 'one thing at a time' and that makes sense in the line of how things will generally happen, but you also need reassurance that the other one is ok given the large difference in size from scan to operation and it will make a huge difference to your mental state once you know - they NEED to understand that, so if necessary 'make a nuisance of yourself' until they give you that reassuring scan.
If you really are getting nowhere with your hospital, even via your GP- then ask for details of PALS at your hospital (patient advise and liaison service).
It is (as you thought) the way breast cancer is treated - I was surprised at the lack of rush, as it doesn't grow as quickly as we imagine (ie we think it's growing overnight!), but the lack of BC nurse is not how it works and that is appalling. (Mine was new to the role and rubbish too- makes you wonder why they take the job, doesn't it?). But, the concerns you have are real and immediate and need to be addressed as soon as they possibly can.
Thinking of you with kindest wishes,
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I am reiterating what the other ladies have said, the Cancer doesn't grow that quick it must be the position that they are in. Like the other ladies that have replied, my cancer was also larger than they thought, 2.9CM became 4.5CM and 0.5 DCIS. No lymph involvement became lymph node involvement. As for your BC Nurse she sounds pretty poor. Mine wasn't great either, you do wonder why they are doing the job. When you've had your Surgery the breast will be looked at before discharge home, so if the Surgeon hasn't seen the other breast before he operates get him to look before you are discharged home.
If its any consolation, I panicked at times as I didn't seem to be getting appointments to discuss/start treatment as I thought should happen, my Surgeon told me it isn't a race!! I can see that now, best they get it right rather than rush you through. Regarding the scan, mine was done months after my operation.
I'm so sorry I meant before you leave Hospital after Lymph Node operation ensure Surgeon looks at the other Breast.
Thanks for that, Peter
I am inclined to delay this lymph node op and ask for a full body PET.CT scan asap before proceeding.
The reasons? I've been thinking it through logically (I hope!).When I was first diagnosed with breast cancer back on the 1st March, one comment from the consultant stuck in my mind very strongly:He said "It doesn't matter whether we operate on you next week or in 3 months time, the outcome will be the same, there is no rush".
Also that it was fine to change my mind about whether to have a partial or full mastectomy, the decision was up to me. It made no difference going for one or the other and even if I turned up on the day of the operation and changed my mind at the last minute and decided I need more time to decide it was perfectly OK to do that.What has happened in the interim:
New to this game, I am then told post-op that mammograms, x-rays and ultra scans don't see everything.Which gets me to thinking: if the consultant said at the beginning there is no rush and he could just as easily have done the first operation 3 months down the line then that still stands, yes? So if I decide to hold back on this second lymph node op until I have the reassurance of a full body scan that would be a perfectly reasonable thing to ask for under the circumstances?What if the cancer has actually jumped ship and is elsewhere? After all, I know now that ultra scans, x-rays & mammograms can't see everything. They a) can't see the actual size of the tumour or how far the cancer has spread away from it and b) didn't pick up anything wrong with the other breast when there damn well is.Seems to me they work in partial darkness on a 'cut it open and see' basis, even if they do follow tried and tested methods for treating breast cancer - a 'path' or 'story of what will happen' I have just learned it's called today. EXCEPT! - IF there is cancer elsewhere in the body that surely impacts on whether it's worth bothering with the lymph node removal in the first place? After all, quality of life is most important here. If lymph nodes are removed which could possibly cause lymophodemia and a weakening of the muscles in my dominant arm and I find out further down the line that there is cancer elsewhere anyway I'll have an unnecessarily b*gg*red up arm on top of possibly more seriously affected parts of the body.I am inclining more and more to delaying the lymph node op until I've had a PET/CT scan which will give a full picture of what the hell is going on inside the body, including which other lymph nodes are/are not infected. To me that's a no brainer, I don't care what the so-called specialists say, cos I'll bet your bottom dollar the reason why a full body scan isn't offered to all suspected cancer patients right from the off is down to COST. Call me cynical, but I bet I'm damn well right!Well, it's about 3:30 am now, so I'll shuffle off and make a hot drink and go try get a bit of shuteye, there is another battle to be fought tomorrow! Wish me luck, and thanks to those of you who bother to read all my stupid waffling! xx
Hi,mariesnowgoose....that seems very logical and clear , well done you for being proactive about your own health ( and life ) .i had WLE chemo rads and lymph nodes removed , put on letrazole and sent away . No probs for a bit, then lymphodema ......I think at that point I should have had a ct ......but I was told it had always been a risk and fitted with a sleeve . 3 months later blood tests are odd , given a ct , whoops your liver secondaries are so bad you might not live the next few weeks , started IV chemo the next day . Then the icing on the cake “ those liver cells have probably been there from the beginning , but letrazole was controlling them til now “ Anyway , I had all that IV chemo , am now on oral , am still here and liver tests are slightly improved this month . Increasingly I feel that it is all a bit hit and miss , but that is just me ! I hope you get someone who understands and is willing to discuss it with you and you can make a decision that ( after all ) you will have to live with . None of us need mental stress to add to our issues .best wishes .....x
No, I don't think it is just you, and for all I am new to this game, still reeling and trying to find my feet, that makes it all the more important to have a more comprehensive understanding of what you're letting yourself in for down the line and a better explanation of why certain procedures need to be done at certain times. If the answers are vague, partial or non-existent then I think all of us have a right to stop the process immediately and demand to have better information before agreeing to be sent on your way down the sausage machine conveyor belt.If full-body scans really do give a bigger and much more accurate picture of what's going on and where, then why aren't they offered as routine before you're shoved under the knife? The knife may not be avoidable, but there are still choices to be made and in my view they should be fully informed choices - if you haven't been given the full picture, both literally and via decent verbal explanation then your choices are not informed.I haven't slept a wink. How can this sort of patient treatment be good for anyone?!
I totally agree with your last question. I think the problem with the medical teams is that 'they have seen it and done it a million times' and just don't seem to understand that it's the first time for us.
My oncologist was so dismissive and rude it was unbelievable, but at the time I took it - in any other walk of life I would never have tolerated it, but at your lowest ebb quite often you just "take it and do as you're told". So, well done to you for taking back some control. It's your body after all.
I will say though that if the cancer has spread - it wouldn't have spread to your other breast; far more likely liver, brain, bones or lungs. So your other breast would far more likely to be a different cancer. (if it is)
Could you insist on a sit down meeting with the surgeon today and explain your concerns, (given the op is tomorrow). Ask how long a body scan would take to organise. Yes, things do change from scans / pathology results and that is why unfortunately their advice/ treatment plan changes - but your changes have been enormous. As you rightly say you want to have a fully informed choice and your thought process to ask for the full scan before you make that fully informed choice is surely something that they should understand.
Some women are 'get it out and do everything to get rid of it/ prevent it coming back', others actually decline the usual 'cut and burn' treatment - choosing diet/tablets instead, so they are also dealing with a wide range of women who are poles apart in their thinking. It may be because you chose a full mastectomy for the 1cm (supposedly) they are seeing you as a 'get it out and do everything to get rid' person. I had 8cm chopped and was delighted that I was large enough to save my breast (albeit with a huge dent now). If they are thinking you are in the first 'camp' the full lymph node clearance would be along those lines wouldn't it?
I definitely think you are right to need more clarification before your next operation.
So I have finally had a call from the breast care nurse at the hospital this evening.
Feeling much better after our discussion!
I am going in for the op tomorrow, which will be the 2nd slot in the morning, and the consultant knows he needs to speak to me beforehand. Have been reassured I can still refuse the operation once there, but more likely it will go ahead now.
All it took was a conversation with the right person, but unfortunately this hospital is desperate for more cancer nurses as just not enough to cope with a massive workload. Apparently they used to have a whole team of cancer nurses a few years ago who came out to visit patients after being discharged from hospital. That luxury is now long gone, hence being left adrift to fend for ourselves Onwards and upwards
I hope everything goes well for you today - thinking of you!
I so glad you finally got a call from BCN. I can"t get over how badly you were treated. I hope that since you seen your surgeon things are alot clear and if you had op that it went well.
Wishing you all the best. Gentle Hugs and wishing you brighter days ahead.
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