Preparation for Post Surgery Results Appointment

[Carine-Lou]

I had my DEXA scan today, didn't even need to strip off. Just un button trousers, a few minutes under x-ray.

It was done and the lady said it could take eight weeks for results to come through. 

She wanted to know why I hadn't started the letrozole.

I'm waiting till I have a proper consultation I got a hospital perscription.

Just handed to me and the registrar never discussed anything just got a leaflet. 

So I will wait till gp practioner appt next week. I'm not just throwing tablets down my throat for five years without a discussion on what I'm already taking etc. 

[TDG]

Sorry about the delayed reply, I have been limiting screen time while I recover due to tiredness. Appreciate all the feedback. I managed to get some of the questions I had answered during my appointment, but it didn't seem the right time to discuss endocrine treatment or bring up dexa scan as the focus of the appointment was around a CT scan that had been requested due to SLNB - 1 of 4 nodes positive. I did manage to get a printout of my histopathology report, thanks to the CNS team and requesting it in advance. I've just created a new topic covering questions on that and the next appointment where what I think my revised treatment management plan is due to be explained. I feel I am going to need to make a decision between Axilla node clearance surgery vs. Radiotherapy to the Axilla and have posted a question there for advice/information to help in the decision making journey.  

[Carine-Lou]

Same boat going down hill one weekend I thought I was **bleep** it.

Went to my gp Monday first in got treated with strong pencillin and all sorts they listened to me.

I cried when they said go to JC, so they gave me seven day supply 

I ONLY HAD AN INFECTION AND BLOODY PNEUMONIA 

Taking gabapentin to mask the pain.

Now today off to a rehab class at James Cook to get my right arm working.

And guess what my brain is working too.

I don't think I could represent someone at a tribunal my brain ain't quick enough 

But I could do a written submission though 

Yes the surgery and meds were killing me off too

[Tigress]

Hi @Carine-Lou fellow lawyer pal.  Well, I’m an ex-lawyer now but can only imagine working in such a capacity with this brain fog and low mood.  It would be impossible.  I’m being sent for a CT scan on my brain today to see if there’s anything dodgy causing it.  Ideally it would have been an MRI but that would require sedation which they won’t give me.  How I would love to do normal things that most people do, without thinking, on a daily basis but nope, life has collapsed.  I have a family history of stroke and dementia so have been worried it might be the start of that but have been told by a neurologist that it is not - yet.  I “got away” with S1 G1 cancer with no node involvement or LVI but the treatment has completely floored me.  Good to hear that your brain fog has gone but you’re absolutely right to tackle one problem at a time.  

[JoanneN]

Hi again @TDG I'm answering about the bone   scans , I think there's some regional variation as to what they do . From my own experience plus that of my Breast Care Support Group in regard to hormone therapy and bone health in my area they don't  routinely do a baseline bone scan but if you're started on Anastrozole or Letrozole you have one after about 3 months to assess your bone density and whether you might need a change of medication or a calcium supplement prescribing .

 When I did my online Moving Forwards course the CNS on a Zoom sessions said that all her patients who are on Anastrozole and Letrozole are automatically prescribed ADCAL however there's regional variation with this as well . I checked with my team and they just recommended taking a Vitamin D supplements if you're bone scan results are normal .

As regards the rest of it I'm not sure but I hope they will make it all clear to you soon xx

[Shi]

TDG you ask as many questions in any of your appointments as you want ❤️ you look after you and if you are treated in any kind of rude or dismissive manner then you get to the pals office and let them take it up 👭 they have duty of care to you ❤️ and they will look after you ❤️ do it your way 💪❤️💕💕✨✨Shi xx

[TDG]

@Tigress, @Shi, @Dunnock thank you so much, appreciate all that you have shared.

I have always been one for detail (& I think like you tigress not really ever been a fan of just blindly doing what I'm told to, without understanding the rationale), perhaps this isn't such a great thing when it comes to my BC journey as it has at times been overwhelming for me when trying to distinguish between what I think I should be able to to understand as a non-medic vs. what I'm told I can't & hence should leave to the professionals. Either way what I have lean't so far is that I need to restrict what I ask at appointments as I can tell that my surgeon isn't used to so many questions being raised. I always go in with my notebook and pen with prepared questions & ready to jot down key points before I leave as I know I'll forget/miss something otherwise. It's overwhelming as it is, when you go in and are given new information that you don't understand at each appointment.

So I greatly appreciate all the points everyone has mentioned - I can now just go in with a list of questions to ask if they aren't covered by default at the appointment.

If the DEXA scan isn't mentioned when I get to see an oncologist, I'll raise it with my GP as I definitely want that done before I start any endocrine treatment. The reason I spoke to my GP early on is because I could tell that the MDT scope of care was very focused on my BC, whereas I wanted to know how I make sure the decisions I make, take into account my overall health and welling-being (not just BC).

@Tigress, I'm not familiar with the bisphosphonate treatment you refer to, but expect I will find out later if I need to (crossing each bridge as I get to it). I hope all goes well at your next oncology appointment on April 24th. xx

[Carine-Lou]

• I have my Bone Densitometry 5 th April, but I brought it up at the meeting I had to fight "tooth and nail" for about final histology results, after surgery. They wanted a nurse I had never met to just do a phone call. Indeed when I attended about dressings from surgery, one of the nurses was intent on giving me information but I closed her down.

As like you I want everything in black n white preferably in writing. Also I sent them a list of questions which BCN had helped me to write prior.

He was a registrar in a hurry but I was determined. I just said when he handed me the hospital perscription, " I will require a baseline DEXA scan before I take letrozole 2.5 mg once daily!

He said he didn't know how long that would take.

But my experience at my hospital is "it's on you" that's the nurses favourite saying when I told her I was in too much pain to do the arm exercises. 

But I have gone off point now I believe that's the lack of oestrogen. It makes my brain foggy, and memory poor 

So I didn't want to get another pain source for them to say ooh you can expect aches and arthritic pain at your age after beginning Letrozole.

When the letter came it stated twice "I have arranged for her baseline DEXA scan as per NICE guidelines".

However I would ask your GP too they have been marvellous with me and really took the place of invisible breast care nurses at the hospital. 

I don't rely on my hospital anymore I'm just a number that needs processing quickly.

So now my view is after dreadful surgery "let the buyer beware". 

So I do research via the excellent BCN nurses on phone when it's specifics.

Also as my letter stated he examined my left breast (the only one left).

He stated it revealed "dense" glandular breast tissue mainly at the left upper outer quadrant. 

Well BCN and what I have read Lobular cancer is very difficult to see on a mammogram.

Yet he said arrange for her 1st surveillance mammogram for January 2024. So if it's not the right kind of mammogram 3d or something I will be going elsewhere. With more up-to-date equipment. 

As I still can't use my right arm three months later which means can't hoover blow dry my hair so life is not in anyway back to normal. 

So amputating my left breast is non negotiable once bitten never again.

Don't laugh my consultant made me believe masectomy was like getting a tooth out and I would be fine in three weeks. Oh and be on holiday abroad in three months. 

It's been horrific and not having a local hospital or nurse has added to it all 

After 7/8 weeks my GP prescribed a seven day course of strong antibiotics. These were life changing suddenly my brain cleared I wasn't in  so much pain and cut down on Gabapentin tablets and all that chest/rib pain lifted.

My family & friends immediately noticed a change in my voice conversation and mobility.

I was even able to tidy up the house a bit, myself.

"Co-amoxiclav is an antibiotic used for bacterial infections. It contains amoxicillin (an antibiotic from the penicillin group of medicines) mixed with clavulanic acid. The clavulanic acid stops bacteria from breaking down amoxicillin, allowing the antibiotic to work better".

I am ER positive with an Allred score of 8/8 and HER 2 was negative. 

08 lymph nodes taken no cancer no metastatic disease. Nottingham prognostic index is 3.7( moderate prognosis)  

Oncotype DX test score is 21. 

MDT discussion for endocrine treatment and bisphosphonates.

I'm taking neither before I get DEXA scan in April.

But I am taking ADCAL - D3 dissolve 1500 mg a few times a week which is calcium carbonate and vitamin D3.  

We didn't discuss the pros and cons of endocrine treatment, he just gave me a copy of the BCN leaflet on Letrozole and a photocopy off the internet pages for bisphosphonate treatment. 

That was in letter to the GP so no one has read it yet, and as registrar  knew nothing about my pre existing conditions.

Nor medication I will have a proper conversation with nurse practioner at surgery or go after DEXA scan.

My mother had terrible had arthritic pain etc and I intend to get well from one ailment before I move onto turning myself into a complete OAP.

I used to swim daily before this stupid cancer surgery. 

So after physiotherapy on my arm after nearly 12 weeks after. When I can pull up my own jeans and blow dry my own hair will I even think about moving on to give myself more physical or Brain fog problems 

Letrozole might not be the one for me either as I asked him what if that one doesn't agree with me. He said tamoxifen?

Hmmm

So I will be doing my due diligence reading up etc as I have a pre existing eye problem and have had an operation on my eyes at the same hospital. 

I can't have constant brain fog, as how could I attend a DWP tribunal with a client (who could have waited years) with their case. 

Everyone has to earn a living and it's all I have done since 1997, social security law.

If it shortens my life so be it, as I can't even stack shelves in Aldi with a dodgy right arm. 🤭.

But I like to think things out in a reasoned manner now my brain is back in town.

[Tigress]

Hi @TDG I fully expected to have a DEXA scan before setting out on endocrine treatment (and blood tests) to set a benchmark but I didn’t get anything.  I actually think that this was a mistake as I have been assigned to the registrar oncologist who is still learning the ropes.  After 10 weeks I contacted my GP who said it should be organised by oncology.  My GP contacted the Head of Oncology, who I have not interacted with, and the appointment came through the next day.   I had the scan at the end of January but still haven’t had the result!  I expect to get that when I have my 3rd oncologist appointment on April 24th.  I have to say, I’m rather terrified of the bisphosphonate treatments if they want me to have it, as the potential SE sound horrendous and I’ve been hit fairly badly with SE from the Letrozole BUT I am led to believe that the protection against spread to the bones is worth the risk.  I’ll cross that bridge when I come to it.  I do know the blood tests are arranged by the GP. If they haven’t organised it for you yet, lobby the nurse or oncologist, whoever you’re able to speak to first, as it’s important to have it.

I am a retired lawyer, not that you’d know it as I’m unable to string two coherent sentences together these days, so am very particular about detail and causal links.  Some people don’t want to know and just place their trust entirely in their MDT, which is a legitimate response, but if you are the type who feels more in control by knowing the detail, good or bad, you must insist on getting the information prior to taking decisions on your treatment.  I am a believer in being a partner in your own care rather than merely doing what you’re told.  The difference is being given clear information and giving clarity about your own health outside of the cancer, family medical history too. 

[Dunnock]

Re LIV, I remember someone saying in this forum - sorry, can't remember which thread - that it is discussed in the US, but not given much attention in the UK.  Not sure why that is  but presumably is taken into account in treatment recommendations as and when necessary. 

Dunnock 

[Shi]

TDG it was only after op that I was advised of LVI. I was no node involvement. As it was TNBC it was chemo and rads. I 3 fec, 2 docetaxol then 1 fec and 15 rads and 5 boosters. When I mentioned the LVI I was told don’t worry about it, so I never have and for me believe the chemo 🥊🥊🥊🥊 it, but this is how i handle it ❤️personally for me❤️ everyone finds their own way on the rollercoaster/magic Carpet ride 👭 ❤️ do what’s right for you, your own way. I did have a notebook throughout everything and had all my questions written down and made notes of their answers and that irked for me because I could look at what their answers had been rather than trying to remember what had been said ❤️💕💕✨✨Shi xx

[TDG]

@Dunnock thanks for the tip, re: getting the histopathology report. I'll see how the appointment goes.  

[TDG]

@Tigress thanks for sharing that. It's been very informative for me, though I do appreciate that each of us will have a custom treatment plan. And it's good to hear you have had a good outcome. I'm detailed/analytical in nature so have always wanted to understand the reasons for decisions/choices, which hasn't been easy with BC given my lack of knowledge on the subject when I was diagnosed & even now.

I have just found the final correspondence that was sent to my GP, and see that in the summary for the first biopsy taken after my initial mammogram it states that LVI present. Then for the second biopsy that was taken after the MRI it states LVI not seen. LVI was not mentioned by anyone during the previous appointments whereas everything else was. So I think I'll have to wait and see what the surgeon tells me during the results appointment and ask the question about it if it doesn't come up.

I have also received an appointment letter for a CT Thorax abdomen and pelvis scan. As this was unexpected on my part I spoke to my CNS, she mentioned it was after the MDT and that they will talk to me about it when I come in for my appointment.

This is a separate question, but I'm hoping to get input from anyone who can. At the time of my initial diagnosis I spoke to my GP about bone health when taking hormone therapy. She said they would typically do a bone density scan to get a baseline view before starting. Do you know if this happen automatically as part of the treatment plan, or would I need to request it via my GP?

[TDG]

@Carine-Lou sorry to hear you've had such a difficult time there at with NHS resource constraints regionally.  It all the more makes me appreciative of the care I've received so far. Especially during my overnight stay for surgery, I could see first-hand how it was very much a team effort from ward nurses, porter, physio, CNS's, catering staff, radiology, anaesthetists & surgeons. 

[Dunnock]

That does sound grim, Carine-Lou. I'm not in a city and my appointments have been spread across 3 different hospitals and 2 different Trusts so far, according to who does which bit of the process. But at least there have been follow-ups and the surgeon came to speak to me briefly after my op to tell me how it had gone.

Dunnock 

[Carine-Lou]

Ah it would be very problematic at JC Teesside and in towns not cities 

They've adopted the approach of no need for these women to see a consultant post surgery.

They don't even come down and speak to you prior or post surgery even for a masectomy.

Due to the huge backlog of cases, bodies awaiting treatment. It's about volume not bespoke treatment the individual needs is lost in the translation.

No cancer nurses, no detailed explanations just leaflets. Off you tott.

Also their are time limits so they're wanting to move you on like the checkout at Aldi speedily

[Dunnock]

Just popping in with a tip about getting a copy of the histology report - though appreciate this will vary from surgeon to surgeon (and Trust to Trust), and also how each person feels individually.

I was trying to see the report on the surgeon's screen when I went to get my results, then realised what I needed was a copy of my own. I asked if I could photograph it and he was happy for me whip out my phone and take some snaps. He even obligingly scrolled down for me so that I could get all of it!

I suspect it would have been a lot harder to get a copy retrospectively simply because such a request is easier to sideline and 'overlook'. Doing it it in the moment worked in this case, though obviously it's important to take the context into account e.g. feeling confident about asking, feeling its appropriate and being OK with the report being written in 'another language', one that communicates information amongst specialists.

Dunnock

[Tigress]

Hi @TDG I think if LVI is present it can be treated either by radiotherapy or by chemo depending on how it presents.  You’re very likely to have radiotherapy as part of your treatment plan anyway.  Chemo would be decided on a case-by-case basis, therefore none of us non-medics can give a definitive answer.  No-one had/would talk to me about LVI hence my long, military manoeuvre to get hold of my histology report.  

I think you’ve said you are Stage 1 Grade 2 IDC and probably without node involvement?  Very similar to me.  I had Stage 1 Grade 1 Er+ PR+ HER2- IDC with a small adjacent DCIS.  They came out together and measured 15mm.  Clear margins in surgery, no node involvement and no LVI.  My treatment plan following surgery was hyperfractionated radiotherapy (only 5 sessions but at a higher beam) plus endocrine treatment (as I was 66 at the time, I was given an AI, Letrozole).  My oncologist keeps telling me that I am low risk of recurrence and even less so of spread (obviously no guarantee).  So much so that the surgeon didn’t think there was any point in doing any genomic assays (like onco type etc).  ER+ IDC is the most common of diagnosis so extremely well understood by your medical team.  I would imagine you’ll have something similar in treatment and will come out the other side successfully. 

[adoptedmanc]

Hello again @TDG 

If you are anything like me I was still having some sort of a cycle (ie other menstrual symptoms if not necessarily a bleed) I would mention it. I’ve got a teenage daughter and I found that I was getting a few cramps low mood etc at the same time as her and little or no bleed (my mum had had the complete opposite with very heavy periods during pre menopause) 

As to who decides I’m not entirely sure: it was the surgeon who wrote to my GP requesting they dealt with the prescription but the oncologist who agreed with my analysis. Psychologically I wanted to go on Tamoxifen over Letrozole as I feared the Letrozole side effects over the Tamoxifen 

AM xxx

[Shi]

TDG not all tnbc’s have brca gene, I didn’t but do have breast cancer run in family and cousins do carry the gene, but as you know carrying the gene doesn’t mean you will get breast cancer. Everyone’s treatments are tailored specifically to your case, so you just have to get on Aladdin’s magic carpet ride and hold on because treatments can change all along the way specially to you as your team monitors everything ❤️ step by step and day by day you’ll get through 👭 breast cancer now is here for you and remember your teams have seen it all before and know what to do ❤️💕💕✨✨Shi xx

[TDG]

@Tigress thanks for bringing up the point about LVI, I will make a note of it. Do you know how the presence of LVI affects the treatment plan? Is it one of the factors used to determine whether Chemo would be beneficial or not, from your comment about the blood stream? Regarding the histopathology report, I made the request to my CNS yesterday but not entirely sure it'll be available on the day as another  CNS will be covering for her, as she is away the next couple of weeks. It does seem that the NHS process to get your own histopathology reports isn't the most straightforward and there is always a delay. Keeping my fingers crossed as I'd really like to see it, even though I know a high-level summary is written up in a letter and sent to my GP (as this was done for the previous 2 biopsies I had). I know what you mean, the waiting has been the hardest part of the journey so far. I'm trying to arm myself with as much knowledge to ask questions relevant to me as otherwise my experience is that I get minimal basic information during an appointment and then don't know what to ask myself.

[TDG]

Thanks @JoanneN, @adoptedmanc. @JoanneN Sorry to hear you have been though a difficult time. You both raise a good point about menopause status. I'm technically in peri-menopause, now 49. I've not had a period in close to a year, but this happened before where I then had a regular cycle for almost a year, it's been on and off for a number of years with light cycles in between. My GP has previously requested FSH, LH blood tests, due to my irregular cycles. So I don't really know what would be most appropriate from a hormone treatment perspective. During my initial diagnosis meeting with the surgeon and CNS, both tamoxifen and letrazole were mentioned as options. In terms of who establishes the hormone treatment in the context of MDT team members, does it fall under the surgeon or the oncologist or another? To date, I've not had contact with an oncologist, only interacted with the surgeon and CNS.

[TDG]

Thanks @Shi. I had to look TNBC up as wasn't familiar with the acronym. The pre-op staging (provisional) I was given during my initial biopsy result appointment was Stage 1, ER+, PR+, HER2-, Grade 2 IDC with no lymph node involvement in ultrasound. I recall I asked about genetic testing at the time with a different reason in mind; as I had no family history of BC, I wanted to understand what my diagnosis would mean to my sibling at the time, and was advised it wouldn't apply to me. I had no idea what that really mean't for me at the time, and think I still don't. Would genetic testing only be applicable if my post-op pathology result changed to include TNBC? 

[Shi]

TDG yes genetic testing. I was tnbc so the trust I was at did genetic testing. I’ve known others on here who were tnbc some have had to insist on the testing because their trust did not automatically offer it to them upon a tnbc diagnosis. It’s just something if you are diagnosed tnbc. If you are, keep off dr Google. Sending big ❤️💕💕✨✨Shi xx

[adoptedmanc]

Hello @JoanneN 

I’m so sorry that you’ve had such a tough time with your hormone therapy.
It sounds to me that even within breast cancer world the understanding of menopause could be better much like the wider medical profession.

AM xxx

[JoanneN]

Hi @adoptedmanc I found what you had to say interesting . I was asked 3 times at various stages about my menopausal status and my reply was always the same ,that I wasn't sure and had been told that I could not be considered to be post- menopausal until 2 years after my last period ( it was 14 months after the first time I was asked 18 months the last time) .

My Consultant didn't seem keen for me to have an aromatase inhibitor and prescribed Tamoxifen . I was 56 at the time , so this was probably not a good option for me , also I had sustained a Central Retinal Vein Occlusion (CRVO) 2 years previously which has left me with very poor vision in my left eye and as there is a risk of ocular side effects with Tamoxifen, I was afraid of something happening to my good eye. I didn't take it and had the blood test which said I was post - menopausal . I brought all this up with the Oncologist who agreed that Tamoxifen was not suitable for me as CRVO is a thrombotic event and she recommended Anastrozole .

Unfortunately that didn't suit me , I'm lucky enough to be low grade and decided to stop taking it after 5 months but the side effects haven't entirely reversed.

My Surgeon has been great really but I was concerned that he somehow missed the CRVO in my medical history , or didn't completely grasp the significance of it .In some ways the CRVO was more frightening than the cancer  more debilitating and has had life changing effects .

It doesn't seem to be as straightforward as I was led to believe to diagnose menopausal status but I wish I had known mine to begin with as it would have saved me being prescribed a drug that wasn't suitable for me and given me the chance to properly discuss Anastrozole with my treatment team before starting it. 

@TDG one thing I should have said in my reply yesterday - make sure your team know your full medical history . If you think they may have overlooked / forgotten or not fully grasped something then tell them .

You sound as though you are very organized and thorough person so I'm sure you'll do fine 😊 x

[Carine-Lou]

It's good you are getting an appointment Middlesbrough. 

Their follow up is a nurse phone call only.

I had to do subject access, request and a letter, (several). In order to get results finally what a battle it was. 

[Tigress]

Hi @TDG I was given basic information in my follow up appointment and had to go through a palaver to get hold of my histology report, so I hope that they provide it according to your request.  They may tell you this anyway but it’s worth asking about LVI (lymphovascular invasion) as cancer cells can spread through the blood stream as well as the lymphatic system, so it’s worth knowing whether there was any LVI, particularly if your nodes are clear.  Good luck with the appointment, things get easier when you know exactly what you’re dealing with.

[adoptedmanc]

Hello @JoanneN and @TDG 

Your follow up appointment will almost certainly detail your next treatment steps including hormone therapy 

At my appointment I was asked about my menopausal status to which I replied “I’m not entirely sure my periods are lighter and less frequent (woohoo!) and I get a few flushes”. The (male) consultant requested “the” test which apparently showed I was post menopause and he said I should be prescribed Letrozole. However I wasn’t convinced as I’d had a period around 3 months before (the definition of menopause is the 12 month anniversary of your last period after which you are classed as post menopausal) so I questioned this with my (female) oncologist who confirmed that the test he requested was not definitive on menopause status. I was therefore prescribed tamoxifen and at my 12 month follow up with an endocrine nurse practitioner discussed what happened over my prescription, she requested a further more comprehensive blood test due to me having occasional light vaginal bleeds at that point. If I was definitely post menopausal she would have requested further tests to investigate the bleeds but was happy that what I was experiencing was a period of sorts so it was still correct for me to take tamoxifen.  I’m not sure of the difference between the tests and why I wasn’t given the second test in the first place (cost maybe??) but the best way to determine menopause status is the date of your last period if you are still having them 

I hope this is helpful 

AM xxx

[JoanneN]

The questions you have put down are all relevant but they are ones that should be answered as part of your follow up anyway . I never received copies of my histopathology , however my Surgeon sent a copy of all correspondence with my GP directly to me including the type , grade , size of my cancer , result of the surgery and prognosis. These were also helpful when I made an insurance claim .

 I'm not sure how old you are but depending on your results it may be important to know your menopausal status if you don't already . It can be confirmed by a blood test .

Best of luck for next week x

[TDG]

Thanks Shi. Is that genetic testing? I’m not familiar with how that would affect my treatment plan.
I just thought of another question, though I don’t know if it’s one I should ask.
Will I go through a Oncotype DX test?

[Shi]

❤️depending on which type of breast cancer you are diagnosed with you might want to ask about a brca test too ❤️ sending 💕💕 to you for your results next week 👭💕💕✨✨Shi xx

[TDG]

Ahead of my appointment for pathology results next week, I'm wondering if there is anything I should prepare as questions in advance. Any tips, suggestions would be appreciated.

I'm planning to request a copy of of the histopathology report via my CNS in advance, so that they can print it out ready for the day, as I wasn't given either of my biopsy histopathology reports during previous appointments, they weren't able to provide them when requested during the appointment.

I don't really have any questions noted down myself, other than the following:

1. Were clear margins obtained?

2. What was the result of the SLNB? How many lymph nodes were removed?

3. Is the final histopathology different from that seen in the 2 biopsies that were taken? i.e. type of cancer, stage, grade etc..

4. What are the next steps from a treatment perspective?