Interpreting post surgery histopathology report / Preparing for final treatment plan appointment

[TDG]

@Guida Sounds like your wig appointment was fun, in the midst of everything else that's happening. It's great that you found one that looks better, hope it arrives on time 🙂 Soon after my diagnosis I cut my hair short (pixie) for both convenience post surgery and also to see how I would feel with such short hair having never had such a short style before. I think I was partly also subconsciously preparing for the possibility of losing my hair down the road with treatment. Anyway it was a good call for me as I kind of like the look & convenience of having it short (who knows I may keep it after all this is over).

I took a look at that link, I think it's another prognostic tool. Having done some research & reading I now understand that all the other tools (such as prosigna, endopredict etc...) that are out there are primarily prognostic in nature, unlike OncoTypeDX which appears to be both prognostic & predictive.

I was actually looking at the trial related info because my oncologist mentioned that if my ODX score didn't show chemo benefit she would discuss the outcome of one of the latest Phase III trial's where the results was due to be released imminently; that was to consider CDKi46 as a potential treatment option if the data supported it for my profile. 

Anyway not long to go for my ODX results next week, I have received my Axilla Surgery pathology report now too, which is quite short compared to the previous one and was easy to interpret without needing help from anyone else.

Take care xx

[Guida]

Hey @TDG! Just wanted to say thanks for your kind words. I hope physio will improve your symptoms.

I stumbled upon an article in the Imperial College magazine about Digistain, a british risk profiling test for breast cancer patients with hormone receptor-positive. You can check it out at https://digistain.co.uk. Apparently, it can give faster results...

My wig appointment turned out to be surprisingly pleasant. Went there with my good buddy and ended up choosing a longer hairstyle that I had back in my thirties. And you know what? It looks even better than my real hair😄. It's gonna take around 6-8 weeks to arrive, so fingers crossed it'll be ready if I need it.

I asked my oncologist about any trials available, but it turns out he didn't know of any that I could participate in.

Oh, and I hope you're having a fantastic and sunny (finally...) long weekend! Take care! xxx

[TDG]

Thanks Kay0987 LauraR for the suggestions. It feels like I've taken a step back with arm movement, even though I've been trying to continue with my usual stretching exercises & massaging with my fingers, so think it's time for some help from a physio who can hopefully apply the correct massage to release it and also teach me the correct technique to use myself if it happens again. 

[LauraR]

@TDG 

I was referred to the physio who massaged out my cording, almost like a guitar string she massaged it, and it popped!

maybe ask for a referral through your breast specialist nurse?

laura

[Kay0987]

I've had various cords after my surgeries. Massage and stretching. Do it multiple times a day. It shouldn't be what you would call painful but you should feel it while you do it. And then time. 

[TDG]

@Guida so glad to hear your treatment plan is taking shape and a lot of the waiting around is coming to an end. I hope the wig appointment went well, am curious what it was like? (so far I've been thinking I'd try scarves when the time comes but it may be nice to try a wig if it's not too uncomfortable during the summer).

I'll be thinking of you as you reach the chemo treatment leg of your journey. Sending positive thoughts your way.

I've been doing a bit of reading/listening to the outcomes of the various trials (RxPONDER, MonarchE, NATALEE) my oncologist quoted (CDK46i) while I await my ODX result along with a lot of physio exercises as it feels like there is something like a cord running through to my forearm. If anyone has tips on what to try to reduce the pain & tightness would appreciate it. And this one is for anyone who has already had a bone density scan, is this typically done before you start endocrine treatment or after? 

xx

[Seagulls]

I shall be sending positive energy in your direction. Sun is shining here too, so good for the soul.

Seagulls

[Kay0987]

Awesome! After chemo you'll be done except for endocrine therapy and maybe radiation since you went through a lumpectomy. So glad you know your plan!!

[Guida]

@LauraR thank you for the advice. I have now two weeks to gather all the positive energy I can xxx

[Guida]

@Kay0987 Yes, that's right nodes and LVI were clear. It's a relief to know the treatment. Tomorrow it's the wig appointment...

[Kay0987]

Well the hardest part is almost done. You'd think actual treatment is the hardest but for most of us it's the waiting around that takes it's toll. And the wondering. I'm betting that you'll come back negative for HER+ and being a grade 3, most of those do score needing chemo on oncotype. So regardless of whether they're doing an oncotype or not you're probably wise to go again and proceed with chemo especially considering that it might be only four cycles. It'll be tough but quite doable. If I remember correctly nodes and LVI were negative, right?

[LauraR]

@Guida 

Thanks for coming back to update.

glad you have an initial plan at least and timeline for starting. I always felt better when I was ‘Doing’ something.

I had epirubin along with cyclophosphamide for 3 cycles then docetaxel for 3. Didn’t feel great for about 7 days then improved. It is all doable.

In next 2 weeks I suggest mental and physical health - fun, drink plenty water, good food, nice walks, sleep, chill time... make sure you have box sets for when you want to lay on the couch and books/ nice garden chair! Moisturise chest area daily in preparation for radiotherapy so skin tip top.

let us know how we can support you, but you got this... there’s a path through now 😄

Laura

[Guida]

@TDG @Kay0987 @LauraR 

Hey there, just wanted to give you a quick update after my appointment with the oncologist. So, it looks like I'll be going through 4 cycles of EC treatment, with each cycle spaced out every 2 weeks.

Now, here's where things get a bit interesting. It seems that there has been a change in the HER2 status. Initially, it was positive based on the first biopsy, then it turned borderline on the FISH test, and now it's showing up as negative on the tumor after the surgery. I know, it's a bit confusing.

Anyway, right now I'm still waiting for the results to come in, which will determine the next steps of my treatment. If the results come back positive, I'll be doing another 4 cycles of taxol, again spaced out every 2 weeks, along with some targeted therapy using Trastuzumab injections every 3 weeks for a year. Regardless of HER2 status I'll be going through radiotherapy and then a few years of hormone treatment.

The good news is that I'll be starting chemo in about 2 to 3 weeks. It's a lot to process, but I'm doing my best to stay positive and take it one step at a time. Thanks for being there for me throughout this journey.

[mornigstar]

yup

[Seagulls]

Breast Cancer Now has a leaflet on how to read your pathology report but I have found the docs very reluctant to provide them as they are written by pathologists and they are looking at the molecular level without meeting patients. They are the most pessimistic compared with medics I have found. Medics are perhaps over-optimistic but the bottom line is no one can predict the outcome for anyone except in broad terms. That’s what I found difficult. Overall women are being diagnosed earlier, that can make it look like they are living longer when they may not be. But that is the wonder of statistics. There are better drugs now and the tests can determine how likely or not your cancer is to recur. So things are looking up especially for the kind of cancer which herceptin treats. That has made a great difference.

Seagulls

[TDG]

@Guida thanks for sharing that. I will see if my appointment is similar to what you describe. I wasn't aware of the type of surgical excision biopsy you've mentioned below, but it's good that they are taking a closer look to get a more accurate result. I was under the impression that when removed they test the entire tissue sample (in my case it was the whole breast - with a breakdown of everything that was found mentioned in the histopathology report). I see what you mean about HER2+ and no OncoType due to that. In case you find it useful, I have now posted a new topic in preparation for my next appointments with surgeon and oncologist. 

xx

[Guida]

Hi, @TDG it's good to hear that you have a plan.  I will check your new topic as I prepare for my oncology appointment too. My understanding, from my appointment with the nurse, is that they will present you with the treatment (based on your results, age, etc), drugs, dosages, and frequency - you'll then have 5-7 days to read side effects (acute and long term), ask questions, and decide. The following appointment is to sign (or not) the consent form. 

They've done a surgical breast biopsy (excisional biopsy) on the lump removed. This result tends to be more accurate as the area analysed is bigger than the needle biopsy, in which only a small sample is removed. In my case, there was no difference in the results (just a much bigger lump). The result I am waiting for is the HER2 expression - in the first biopsy was borderline positive. I was not offered the Oncotype Test (as I'm likely to be HER2+ ?). If private can be considered then why not? (it's not an option for me).  I'm sure in private care the wait wouldn't be quite so long and agonising. In an interview, a celebrity said she had been operated 3 days after diagnosis...Either way, it looks like we are going to start chemotherapy soon...scary 😞

[Guida]

Hi, @Kay0987 I was not offered an Oncotype test. I guess because they are assuming I'm HER2+. I still don't know if I'm HER2 low or positive - they were still waiting for the Fish test results from my surgical breast biopsy. The doctor said because of the grade and the size of the tumour is advisable to do chemotherapy, so he referred me to oncology. The NHS medical team and nurses have been amazing and very professional but the NHS is struggling and the communication has not been the best in my case. Or maybe my expectations were not correct. 

[TDG]

@Guida its good to hear from you and its great news that you had clear margins & no lymph involvement. Just a quick question, when you say the results of surgery biopsy are still pending; did they take another biopsy during surgery? Also did they send yours for OncoType testing? I assume they have the pathology of your lumpectomy already as you have now had the post-op consultation and are awaiting your oncology appointment.

This is my first post, since I had Axilla surgery last week; I've been limiting screen time as I'm still feeling tired and fuzzy headed after the surgery, similar to what happened when I had my first surgery. I'm trying to take it easy, but unlike after the first surgery I don't feel I can switch-off as easily while recovering as I know I need to prepare for oncology soon. Timing wise, what the pathologist I spoke to before mentioned is that on average in the NHS oncology treatment starts within 90 days of the first surgery. I'm contemplating a fews things on how to proceed (NHS vs Private) now given I am now nearing 10 weeks since initial surgery and will be on the verge of going past 90 days by the end of this month. I now have my post-surgery results appointment in around 10 days, with an oncology appointment a week after that. I'm going to create a new topic soon to get ideas about what to ask in my oncology appointment as that's my next milestone appointment after axilla surgery pathology results. 

xx

[Kay0987]

Your story sounds just like mine, Guida 🙂 I was expecting an 18mm tumor and after pathology the darned thing came in at 32mm. But no lymph node involvement or LVI so even with a grade 3 nothing changed. And yes treatment does need to start asap. Six weeks is fine to wait though. You'll want to be properly healed before you start. At any rate did they do an oncotype test?

[Guida]

Hi, @TDG @berry25 @Kay0987 and @LauraR

How are you all doing in your journeys? I hope you are feeling well. You were so kind to advise when I needed it, and I just want to update you and possibly help anyone following this thread. I had my post-surgery consultation this Tuesday and the good news is that there is no lymph node involvement 🙂 and clear margins, so I don't need another surgery. However, I knew this was an aggressive cancer being grade 3 and possibly HER2 + (results of surgery biopsy still pending). It was 39mm (not the 23 mm expected) - so now I just want to start the treatment ASAP. I'm waiting for the oncology appointment. I also read that the prognosis is better if the treatment starts within 6 weeks of the lumpectomy and I'm getting seriously anxious at the moment. Is this just Dr Google's research? How long is the wait from surgery to chemotherapy in the NHS? All the best, Guida xxx

[Kay0987]

I'm so glad it made you feel better. Anyway let us know how it goes!! Any questions you have we'll be happy to address 🙂

[Guida]

• Thank you @Kay0987. Hand on heart, I felt so good after reading your reply. Bless you, I needed it ♥️. I've seen your posts in other threads too and your wise words are so informed but sensible. It's also interesting to see how people are treated on the other side of the pond. Thank you for the clarification on HER2+.I didn't know it was common to be low HER2+ or it could change. I've been telling everyone I'm triple positive 🤔. So another question on my list for my appointment. How are you feeling now, after finishing the first stages of the treatment? Again, thank you for making me smile all day 😊

[Kay0987]

Hi Guida! It looks like most of your questions have been addressed beautifully but I'll add a couple of more things in regards to your pathology report. Borderline positive is not positive for Her+ so it sounds like whether you truly have triple positive or not is still up in the air. I was borderline positive, too, it's quite common, but most of us end up as negative once they do the Fish test. So in saying that I don't think you need to worry about doing surgery first. It's fine as long as preliminary testing (mammogram, ultrasound, MRI if received, etc) shows no sign of extensive involvement and it sounds like in your case it doesn't. Secondly as far as treatment goes, if you do come back as truly HER+, yes chemo and immunotherapy will automatically be offered. They will not do an oncotype test because they know that HER+ tumors always respond well to those medications. If you end up being Her2 negative or low positive (I am considered low positive. Very common and in fact most of us hormone positive tumors are just that) they'll do an oncotype test do determine if your tumor will benefit from chemo. Most grade 3's do but there are quite a few examples on this site alone where they didn't. At any rate depending on your oncotype score, age, and node involvement that will determine whether chemo is given, the type, and the duration. Hope this helps and let us know if you have more questions. But it sounds like your treatment is going exactly how it needs to thus far.

[TDG]

@LauraR, No, I've always received my results during an in-person appointment with the consultant+CNS during a clinic session. Sorry if my previous response sounded like I was getting them in advance. But in order to get my histopathology report during that in-person appointment - I needed to make the request to my CNS in advance with perseverance. I then took it away to digest the information and raise questions later (another appointment or via my CNS). Reason being histopathology reports are typically very long, with a lot of information, so not one I would be able to look at and ask questions about on the spot. I've always been given the broad-level diagnosis details (but have found that certain key information is not given, it's only by seeing the histopathology report + info in letters written to my GP do I then find out what has been left out e.g. LVI, PI and the nature of the positive lymph node...) at my consultant appointments, which does work for me, as I don't think I'd be able to process much more than that during an appointment - as there is generally always something new and unexpected they share. But at the same time I'm the type of person who wants to know what I'm dealing with and be involved in my treatment decision making process by getting the information I need to do so.

[Guida]

Thank you @TDG your post definitely has been of help. I just had this preconceived idea that my case (and every other patient's) would be discussed every week in the MDT and that I would be explained the risks and advantages of different treatment plans, that I would be offered every test known in the books but I was completely wrong. I need to advocate for my case and I was not expecting it...and being an introvert this is quite hard for me. Another challenge with this journey. Happy Sunday 🙂

[Guida]

Hi, @berry25 thank you for your kind words and tips. Another question in the list:  macro/ micrometastases, I just hope I don't have to ask most of these prepared questions on the day 🙄

[Guida]

Hi @LauraR, thank you for taking the time to write your informative reply. After carefully thinking, and although I feel "in charge" with numbers/data/statistics 🤔, I believe in this case it's better to receive the information from the doctor during my appointment. I don't have the medical knowledge to interpret correctly the results and I will be tempted to search Dr Google, with disastrous consequences 😶. It's good to know that I can have access to the report and I will. I'm sure if I find something not discussed in the report, I can ask the team later. At least by knowing what is included in the report, I can ask for any specific result (e.g. lymphovascular invasion) and query further if required. Have a lovely Sunday 😊

[LauraR]

@TDG 

Hi, sorry if I misunderstood but were you getting results before your Consultant appointment? My concern would be receiving ‘unexpected’ result at home on my own and then not seeing doctors for few days/week to ask what it means/what is the plan...(and using google to fill in the gaps).

I understand getting blindsided on the day isn’t great either though...

laura

[TDG]

Hi @Guida, I'm sorry that you find yourself in this situation & overwhelmed. And please don't feel you are intruding, we are all here to support each other in whichever way we are able to, & I'm immensely grateful for all the support I've been offered by everyone as well.

I'm not surprised that you feel overwhelmed with the speed at which your treatment is progressing (speed is a good thing but which with it brings on the additional feeling of being mentally overwhelming - I experienced this feeling early on). I'm not able to answer the questions you have in relation to the specific cancer profile you have & chemo risk/benefit (G3, Triple+, HER2+) but one thing I would say is that the order of treatment in your treatment plan will be customised to you, based on many factors that go beyond what your diagnosed cancer profile is. I've only just begun to realise how nuanced it is after the conversation I had with a pathologist while looking at my histopathology report.

I can relate to the communication challenge you face while being treated as I've faced the same. The way I got my histopathology report was by requesting my CNS to print it and have it ready before I went in for my post-surgery results appointment. I did this as my CNS had previously told me that she wasn't able to give me copies of my biopsy histopathology reports when I went in for each of those results appointments (at my breast clinic, all results are shared face-to-face, nothing is given over the phone or via email), as they did not have a facility to print anything while in clinic. So long story short, I learnt from experience and asked for it in advance - even then I had to persist with the request as my CNS kept telling me it will be available for me to access in 1 month (which was too late for me, as a lot can happen in the world of cancer in 1 month, and I wanted the information to digest and raise questions before treatment not after!). So perseverance is a must; I feel for me challenging conversations to get the information I needed to make treatment decisions and breaking down barriers has been a big part of getting through this journey so far. 

I hope some of that has of been of help, do let us know how you get on. Enjoy the rest of the weekend (cloudy sunshine here). Sending you a virtual hug of support xx

[berry25]

Hi @Guida Sorry that you find yourself here and that you're feeling overwhelmed - there is so much to get your head round isn't there. It sounds like things have moved really fast for you in terms of surgery etc so I'm not surprised you're still reeling - fast is probably good though!  I don't have answers to most of your questions - but I think the oncotype test is just for HER2- tumours. There are other prognostic tests but a lot of them are only for HER2- too I think. I wasn't offered the oncotype dx test until my surgical results appt - so I guess that's the time to ask what additional tests might be appropriate for you - you might get a clearer answer post surgery on your HER2 status too? About the pathology report - I think practice varies in different centres - but I definitely don't think I'll get mine unless I ask for it! My post surgery results letter came out recently and just said one out of three nodes "showed evidence of cancer" - I wouldn't have got the info that it was a macro rather than micrometastases and the size unless I'd specifically asked for it. I think the other thing to bear in mind is that new research on breast cancer treatment is coming out all the time and the NICE guidance may not always be 100% up to date in all areas as it takes time to review and incorporate new evidence - so its possible that may be influencing the treatment that you're being offered. Wishing you all the best with finding answers and a good weekend! 

[LauraR]

@Guida 

Hi,

Sorry you’ve found yourself in this experience but this is a great place for support.

Re histology report. Your medical or nursing staff should be able to print you a copy when you get your results on 2nd May. If they’re available for doctors to view and tell you, the report can be printed out. If they feel they can’t, every hospital has an access department that you can request from. I applied electronically and received them a few days later by e-mail. Do be careful it is what you want though. I knew I had lymphovascular invasion (2 positive nodes) but report spelled out extensive vascular invasion. Google searches show this as poor prognosis. Can’t forget it once read!

My biggest tumour was thought to be 35mm, grade 1-2, Her2 neg, ER pos after ultrasound and no lymph involvement so not offered chemo first. At result meeting post mastectomy it was 55mm with 1 positive lymph. I sometimes wonder if I would have been offered it prior if tumour size had been known-but not dwelling on that now.

I was blindsided by the change/results so I’m glad you’re researching before your meeting. Hopefully there will be no surprises, but always good to be prepared I think. I certainly try to be now!

i don’t have any experience of triple positive, oncotypes or who should be offered chemo first-hopefully someone will be able to help with those answers. But also put them on list for Consultant-what is my treatment plan and why in that order..(which I’ sure is already high on your list).

good luck-let us know how you get on

big hugs

laura

[Guida]

Hi all  @TDG @berry25 @Kay0987 and @LauraR I feel so grateful to have found this post 😊. It is what I needed now as I'm feeling so overwhelmed. Sorry for the "intrusion" but I'm having my Post Surgery appointment on the 2nd of May and I want to be as well prepared as I can. Most of my doubts have been cleared by reading all the posts but I have a couple more. I'm an NHS patient and I was diagnosed on 23/03, I had a lumpectomy with sentinel nodes removed on 17/04. I'm grade 3, triple positive/25 mm. The professionals in the NHS are amazing but I'm struggling a bit with the lack of communication and results...NICE recommends chemo first for grade 3/her2+/>20mm but I was offered the surgery with no option given. My MRI result was received by email "All is well on the MRI - nothing else is seen!!!", my HER2+ result is still pending another test as it's "borderline" positive. The size of the tumour, my age (I'm 51), and being perimenopausal are also borderline factors when making decisions. So my first question is how can I have access to my histopathology report and when will this be available after surgery? The second is for HER2+ type cancer do I need chemo irrespective of node involvement.? Lastly, I read that Oncotype DX cannot be done if HER2+. Is it correct and is there any other similar test for these types of cancers? Sorry for the long message. It would be great if you can help. I wish you all a good weekend. It's very cloudy here but it's not raining😊

[TDG]

@berry25 regarding the question about not seeing pathology reports. I'd say based on my experience and many others (in the UK) that is normal. Getting mine within the timeframe (i.e. post-op MDT results appointment) I wanted to see wasn't easy and required work on my part - otherwise it would have been made available after 1 month. For me personally it was essential to see it (but I know others who feel the opposite), seeing the detail helped me get visibility to my cancer profile and give me information to be able to ask questions later with the aim of understanding the rationale for appropriate surgery/treatment options that were being proposed.

I think I'm generally in a similar shocked state to you, when I go for my results appointments (I've had 2 biopsy results + 1 post-surgery appointments so far, and another to come after the next surgery) - as something new always tends to come up which I have no knowledge about. So the way I have dealt with it is by taking notes and then going away to do reading to gather information, with the aim of asking questions at a later appointment or via an independent pathologist/oncologist/surgeon (if I don't get what I need via my BC team). It's difficult as things move at a rapid pace, so you have to process information/understand what you are being told and then make decisions on treatment within a short space of time. It sounds like you are approaching it in a somewhat similar way by asking questions later; I don't think there would be anyone here (unless they are in the BC field) who would be prepared with detailed questions when they do go for results appointments - so what you feel and are saying is perfectly normal, if I can put it that way :). 

Regarding genomic profiling results (e.g. OncoType DX), while I haven't gone through this, I did ask the pathologist/oncologist I spoke to independently about OncoType DX and Prosigna and the dataset used by them. What I learnt from that discussion was that OncoType DX dataset didn't include much/minimal data that matched my profile of cancer (& other applicable factors such as age, menopausal status etc...) even though there are many who fall under the same broad profile of S1 G2 IDC ER+/PR+, LVI, 1 node etc...; so while it may be an effective chemo benefit/risk measure for some, it may not be so much for others. I'm appreciating the nuances more & more as I'm progressing through this journey. And I know I'll never really ever be prepared as much as I would like to be for any of the appointments I have. All you can do is be prepared at a broad level, there will always be new information which can change the path ahead.

Good luck for your upcoming results appointment... xx

[berry25]

Thanks very much to you as well Laura - really helpful advice.

Love and hugs to all xx

[berry25]

Perfect - thanks for the signpost to and summary from the nejm paper Kay0987 - really helpful.

And overall I'm happy with the info I've had - I just picked up from the thread that some people were getting additional info. and I wasn't sure what was standard elsewhere. I think the problem is that at each stage I don't really know what questions to ask (I wasn't expecting positive lymph nodes so hadn't read a thing about it - ditto with the original diagnosis which was via screening and totally unexpected) - its not till afterwards when I try and make sense of it that I have additional questions. Last time I did go back via the breast care nurses and asked whether it was micro or macrometastases in the node - but I wouldn't have had a clue to ask that at the time - it wasn't until I read the oncotype leaflet afterwards that I saw that there were different categories. To be honest I think it was fine not to get the micro/macro info at the time - positive lymph node was enough. But I have since found a tool that predicts further node involvement after a positive sentinel node - and that needs additional info that I don't currently have. At the moment I've decided not to ask for that additional info - but I guess its useful to know that it might be something to ask about when I get to my oncology appt. Maybe this appt will be the first time I'm prepared 🙂

Thanks again xx

[Kay0987]

That was a very simplified version of describing the usefulness of oncotype scoring. This study, https://www.nejm.org/doi/10.1056/NEJMoa2108873 , and more specifically this paragraph in the study, "We found that postmenopausal women with one to three positive axillary lymph nodes and a recurrence score of 0 to 25 were able to safely forgo adjuvant chemotherapy without compromising invasive disease–free survival and distant relapse–free survival. In contrast, premenopausal women with one to three positive lymph nodes had a significant benefit from chemotherapy, even with a very low recurrence score" is more accurate. So in summation, the younger you are with positive nodes the more you need to rely on other factors along with oncotype. For example, lets say you are 35 with estrogen positive IDC breast cancer with two positive nodes. Even though you might have an oncotype score of 18, they may still decide chemo is useful to you.

As far as getting written copies of your testing results I think it's common in the UK for it not to be automatically provided. But I know plenty of people have asked for them and have gotten them. You do need to be prepared though to read everything in black and white we don't care about your feelings ink. It's scary and will throw you for a loop and there's no way around it. And you can never forget what you've read so you have to live with that knowledge for the rest of your life. Really ask yourself if you think it's necessary. It's not a character flaw to let your doctors parse over to you what they think you need to know. For some people it's protective and they can cope better that way. 

[LauraR]

Hi,

@berry25I wasn't given any of my pathology results - the surgeon/oncologist would just read out what the finding was. I understand that MDT reviews images, reports, results etc so even if he is reading from his MDT notes, they should be thorough.

I did eventually ask for a copy of my scans/histology results from the access service department at the hospital so I have them all. However, be careful if you do this that you are ready for all information. It was hard to see that the vascular invasion was extensive (I was told I had lymphovascular invasion when I asked the question, but it had never been described as extensive).

I used to write down questions before I went to my appointments, based on various scenarios so at least when my mind went blank, I had some things to support as prompts. The specialist nurses used to sit in with meetings and write down the main points of the conversation - this was then given to me when I was ready to leave so at least I could go over it again if I needed at home. They were happy for me to call back with any questions once the information was digested.

Is that something your hospital could offer?

Is there someone who could go with you and ask your prepared questions/write things down on your behalf so you don't need to worry if your head just can't take things in at that point?

It's completely understandable that our heads just can't take any more information when we're in that situation, so it's maybe looking at what you think you need and what you think could help you in that situation. What do you think would help you?

Laura

[berry25]

Hi can I ask a couple of questions on this thread?

First off - I haven't seen any pathology reports - is this usual? I just get the info verbally in the clinic appointment (plus copy of letter to GP after which is helpful but not as detailed as it sounds like the reports are). The surgeon doesn't generally seem to be going off a report either - he refers to handwritten notes probably his own from the MDT. The problem is that I'm usually too shocked at the headline info at clinic to take much else in. But then when I try to find out more after (like using the predict tool) I find I've got lots of missing info that probably is in the pathology report.

The other question I had was to Kay0987 when you said "Oncotype score can be used for any tumor where up to three nodes are positive. However, it's not as accurate when positive nodes". I''m waiting for oncotype score results at the mo and have a positive node - I guess the oncologist might go through this when I see them (but see above about shock - it would be useful to know some stuff in advance so I can be prepared) - but no-one had mentioned the less accurate thing to me before - could you signpost me to some info on this? Thanks

[Cazy214]

Thank you @TDG that’s useful to know about more individual details than just the one node. Let’s keep in touch whichever decision we decide to go down this group is just so invaluable and supportive in what for me is the scariest journey of my life.

sending hugs x

[TDG]

Hi @Cazy214, I can relate to what you are going through. What helped me was the conversation I had with the Pathologist who had a lot of background on breast surgery & had consulted an oncologist as well. She answered the question you had about lymphoedema risk with Radiotherapy to the Axilla vs. Axilla clearance surgery (as I had the same question). She said it was slightly/marginally less with Radiotherapy but still a risk. The advice/steer I was given was based on many individual factors, not just based on a single node being positive, so I'd say for you meeting the oncologist will help you get facts to make the decision. 

Sending virtual hugs your way as I know none of this is easy, but once you make the decision it does take the weight off. xx

[Cazy214]

Hi @TDG 

I have found myself in similar situation. Almost 4 weeks post op masectomy and immediate reconstruction, although I'm very flat chested when given this as on option with the surgeon who does plastic surgery as well it felt like the right choice for me

The nodes are now a new predicament as 4 were removed with 1 being positive. I will have to have radiotherapy to the breast so have asked about this to the arm pit instead of the auxiliary surgery. I am awaiting meeting with oncologist to discuss this.

It's a really hard one, as am already struggling a bit with arm not having full movement and not sure I want more surgery so soon and then long term risk of lymphoedema. Although will radiotherapy pose that risk as well, I can't find a clear answer to that. I don't have the full report and details from histology but some further plans for my journey will have to work to the fact that I'm 52 and not yet menopausal still peri!

Just keeps making my head spin and the anxiety is there again just when you think you're getting a handle on things.

Sending hugs xx

[TDG]

@LauraR thanks for sharing that. I've not experienced seroma or cording (at least not yet) after my mastectomy + SLNB. I read somewhere that having a drain somewhat reduces the risk of seroma, but sounds like you had a more comfortable experience being able to shower properly the day after surgery without it. I did experience the tenderness/soreness inside my upper arm that you mention. And reflecting back, after the discomfort/pain with having the drain tube pulling, the next level of discomfort was that tenderness inside my upper arm. Theres not much there which I would really describe as pain other than the intermittent shooting nerve pain during week 1. Everything else was and still is to some extent related to tightness & numbness. The sensation that I've been stitched up too tight inside, such that I initially felt like I would rip my ribcage & side underarm tissue, when doing the overhead exercises - that sensation has reduced now to something like pulling, but not yet completely gone. I'm hoping with me continuing exercises it will diminish such that I don't feel it at all in the end.

I feel the pulling sensation you mention with my day to day activities, when lifting things - shopping bags, pots/pans etc... & general arm movement. But it doesn't really bother me, almost feels like I'm subconsciously getting used to it as the new norm. Mastectomy scar area feels completely numb, again I'm not too bothered about that at the moment, though did wonder whether I should be applying anything to that area to help now that 6 weeks have gone by (did you?), when I enquired at week 3, my CNS said I should just use soap and water to keep the area clean, nothing else.

Good to hear you didn't need pain relief after clearance. I took paracetamol after my mastectomy + SLNB as a routine as per instruction before exercises for 2-3 weeks, but in hindsight I probably could have done with a lot less than I took. I think my range of arm movement sounds similar to what you describe when it comes to the overhead (I notice that my left arm doesn't reach up as it used to when washing my hair, so partially bend my head to compensate) and sideway stretches. 

I have now come to a decision to go ahead with the clearance surgery. That was after speaking to an independent clinical lead pathologist (who had previously been a breast surgeon). She had reviewed my cancer profile data with an oncologist prior to our conversation. It was such an informative session, it helped me validate/invalidate my thoughts/facts with additional explanation on some points in my histopathology report. The decision felt so easy after that open session, I also got some insight on how MDT sessions go. For me getting the background/rationale for why this surgery is recommended (even though that word has never been used by my BC team to-date) is what made the difference. I also got a glimpse into the possible next decision tree steps (& tips on what I could ask Oncology once my Axilla histopathology is available), which I know I most probably wouldn't get at this stage, from my own team as per process. 

Regarding my reading, I am careful there to only use references that I trust. I only use google to look-up terms & acronyms I'm not familiar with. I know there's a lot of misinformation and I don't have the time or energy to sift through it all.

Thank you so much for sharing what you have. It has helped and is much appreciated, I may be back with more nearing/post surgery :). Now the wait for surgery to be done begins. 

[LauraR]

@TDG

My surgeon doesn't use drains and allowed showering next day which was helpful. I did have minor seroma after mastectomy/SLNB but not post the axillary clearance, no infections either. I did develop some cording and was referred to the physio who 'popped' it with her massage - no effects from it now at all. The inside of my upper arm and under my arm was sensitive and tender - still some numbness, but it doesn't bother me or stop me doing anything. Sounds a bit like what you experienced after mastectomy/SLNB anyway?

The clearance surgery itself was fine - no pain relief needed after, out the same day.. but I did have to go back to the start with exercises and it did seem harder second time round. Maybe it was just me being tired (lazy 🙂 and chemo started four weeks later but my arm didn't seem to stretch as well or as far as I wanted it to and I did get a 'pulling' up my side when I tried. I'm now 7 months on and if I put my hand on my head I feel a pulling at the side of my scar. If I put my hand behind my head I feel a pull on the underside of my upper arm. If I stretch my hand up to the ceiling, I can do it but again it pulls at the side of my scar. I can do them all with no pain, just pulling. If I lay on my back and put my hand straight up over my head, it will go so far but I can't get it flat on the floor like my other one does. However, I'm not sure when I would ever need to do that 🙂 I tend to use my other hand when putting the boot down on the car still because the stretch is just a bit too far. Others may have had completely different experiences.

Most decisions are made in MDT but that can be good as not just one persons opinion?

Your query about the cancer profile with or without surgery - you would get a rough idea if you completed the online predict tool, however it does ask how many positive lymph nodes you have. You could input '1' to get an idea. It also won't help you know if SLNB or full clearance is better - doesn't deal with that specific. However if you want to see the 'prediction' for 5/10/15 survival from your surgery alone, for someone of your age, tumour size, hormone status... it would give you some idea. It also then tells you a prediction if you add hormone medication, chemotherapy, bisphosphonates... It is what some oncologists use to determine your individual benefits of chemotherapy, but remember it is a guide only, and each person is an individual.

Lymphoedema is something I vaguely worry about. I'm much more protective of my arm, careful when using knives, moisturise more, covered up in the heat last summer to avoid mosquito bites... I'm sure I'll forget as time goes on. I'm also looking at swimming or pilates to help movement. I would contact the lymphoedema specialist nurses if I notice any swelling. My thinking was the cancer was a definite but lymphoedema was only a possibility, so I dealt with the definite as priority. What I wanted was a crystal ball to let me see the outcome from both possibilities, then let me pick which was best. Sadly we don't get that option so we have to pick what feels best to us at the time.

My physio has advised me I can move forward with normal exercise now. I have read about the pink ribbon programme which is post operative breast cancer recovery pilates? Your yoga teacher may also have worked with people post surgery before and be able to guide when you return?

Have you called the breastcarenow nurses? Although I do understand sometimes it can get more confusing the more people you speak with. May be worth a try though? There is also 'people like me' where you can ask to be matched to someone who has gone through similar diagnosis/treatment as you, which may help you to get a glimpse into what the future could be like, and therefore help to guide you one way or the other.

I can't tell you the right way to go, I can only tell you my experience. Maybe my surgeon did me a favour by not really giving a different option? He is quite a young surgeon and forward thinking (hence no drains..). He also came highly recommended so whilst I definitely pushed him on questions, reasons, evidence.. I did feel happy to go with him. If I get lymphoedema I will wonder if I should have queried him more. But if my cancer stays away will I care? 

Be careful where you are researching/what you are reading (as someone who googled everything which wasn't always a good thing to do). I am happy to answer anything or help in anyway. I am really sorry you are having to go through this, trying to make the right decision in a fairly tight timescale.. it is so hard..

Thinking of you.

Laura

[TDG]

@LauraR you mention that the second op was much tougher. Can I ask in what way; was it just that you had to persevere longer and push harder with the post-op physio exercises or was the recovery from the surgery itself much more difficult compared to the mastectomy + SLNB that you had done before? When I enquired about the procedure my CNS said it would be similar to before where I will have a drain in for a few days. Possible risks the surgeon mentioned when saying it would be more complex: infection, seroma, cording, numbness etc...

I have just gone past the 6 week mark from my mastectomy + SLNB and still cannot get my arm to go over my head completely, i.e. it doesn't go all the way and touch the mat (I asked to see a physio but it doesn't feel like that is likely to happen as I've been asked to push myself harder, which trust me I've been doing religiously since surgery). I still have tightness & numbness but haven't focused on those sensations much throughout recovery, just getting on with things without straining the arm too much with anything heavy in general unless I feel pain, which is rare. I want to start doing yoga again, which I did up until the day of surgery, and am not sure when the appropriate time is for that & if there are things I should avoid. So wondering if with full clearance I'm going to be heading back to square one with a much longer road to recovery.

As I struggled to give an immediate decision during the appointment yesterday, the team offered to put me on the next surgery schedule date which is just under 3 weeks away. So I'm on the list for surgery and need to confirm as soon as I can and hoping to do that within the next 1-2 weeks. At the time I had to make a decision on my original surgery (mastectomy with/without reconstruction) I went for a second opinion which was very helpful as it gave me data/information I didn't have to make the choice I was being asked to make. I'm in London & technically could go for a second opinion, but I don't really know if that would help me in this instance? What I was wondering is whether I could get an Oncologist's perspective (odd's for my cancer profile with & without surgery from an oncological treatment perspective), which I haven't had yet? I'm not sure if that makes sense as it feels like these decisions are made as a group within an MDT. 

I spoke to another BC nurse yesterday after returning from my appointment, who mentioned that back in the day everyone who was diagnosed with BC automatically had Axilla surgery, but that these days they don't tend to do it all that much due to the longer term problems it brings with lymphoedema. She also mentioned that Radiotherapy to the Axilla can also cause lymphoedema, which I was unaware of so I do have some reading to do tomorrow to understand it better. I took a bit of a break from all things BC today after an all consuming day yesterday. 

@Kay0987 I do hear what you're saying. There are somethings you can't really decide based on data & lists, it feels like this is one instance where that may apply more than others. I'm so used to being analytical using data/facts to make decisions. During my appointment I did feel like my gut was leaning one way, I now need to do the background reading & see if my initial gut feeling & logic are aligned; at the end of the day I want to have no regrets with whichever choice I make. I'm not typically someone who will dwell on an undesired outcome, but I'm not sure I can compare BC with anything else I've faced in life so far.

I appreciate what you have both shared. 

[Kay0987]

TDG, I think it will come down to risk versus reward for your personally and what can you best live with. Do you think in the future if your cancer comes back and you don't get axilla lymph node removal, you won't regret it? We all need to feel in our hearts of heart that we did everything we could based on what we know. Which decision won't you regret? 

For me, if it was in my fat, I'd probably go with removal because I have a lot of anxiety towards future recurrence and scans. My partner wouldn't though I don't think. He didn't even want me to go through chemo. He'd rather be more comfortable in the present than worry about a future that will probably not happen regardless of what decision needs to be made. 

[LauraR]

@TDG 

First of all, great to hear your CT is clear-great news.

I’m sorry to hear your visit wasn’t as successful as you would have wanted and you’re back to weighing things and decision making-that’s really hard.

I wasn’t given an option for clearance either (although I guess I could have declined). I did go with the recommendation and one more positive node was found. Some would say, was it worth it for one more node/17 negative ones, but no-one knew that at the time. I think I was happy that the positive lymph nodes were out totally rather than zapped with chemotherapy/radiotherapy? The second op was tougher, I still have areas of numb, I’ve had to push exercises much more to get my arm right up above my head but it hasn’t stopped me doing anything so far. There is the increased risk of lymphoedema and I now wear gloves to wash up, garden...much more wary for sure. 

How long do you have to decide?

which part of the country are you being treated? Is there a second opinion option?

Laura

[TDG]

Just sharing a summary from my appointment today. It's another which didn't go quite according to what I had expected but that's nothing unusual based on the journey so far. My plan is being defined incrementally and drip-fed to me based on cancer profile data being gathered (I think I find this the most difficult part of my journey so far, and am again being reminded to take it a day at a time.). 

• CT scan came back clear (no metastases).
• I have been offered surgery for Axilla lymph node removal.

The decision is now with me to make. As the next treatment steps vary based on if I do or don't have the surgery the team weren't able to advise on the oncology treatment that would apply to me next. Effectively it's a decision tree where treatment varies according to choices made. It doesn't sound like it will necessarily be a choice between surgery and radiotherapy. I'll only be referred to see an oncologist after surgery if I choose to go ahead or will be referred to them now if I decide not to have surgery.

My surgeon said that there is ongoing debate between oncologists and surgeons when it comes to Axilla lymph node removal in cases such as mine where 1 node is positive. Surgical procedure has evolved/improved from a decade or more ago, so some of the post surgery risks are expected to be less limiting (no guarantee's though as it varies from one individual to another and said that there are risks associated with this surgery for me as he is going into a site that has already been operated on.). I wasn't given a steer one way or the other, when I asked about prognosis data to support surgery or not, saying that discussion would be very lengthy with a lot of debatable points. 

In terms of how affected my positive lymph node goes, I read the histopathology section again before my appointment and it states it was 4mm (so this means it's macro). And it also explains that there were two lymph node tissue specimens taken, each consisted of two nodes (so hence the reason there were four nodes in total). On the day of my surgery I remember I asked the question about # of nodes removed, & the surgeon explained that they would only really know the exact count when the pathology came back, as lymph nodes are clustered together with fat and sometimes cannot be distinctly counted by the naked eye during surgery. There was a section of histopathology text which I couldn't fully interpret, which I asked him about today - he said that it reflected that along with the affect lymph node, there was a section of tissue fat that also tested positive. So in my mind I am interpreting that to reflect that there may be spread or else it may have just stopped there with the node being removed along with the fat. My dilemma now is what choice to make. Can you think of anything else to those points (for & against surgery) I've listed below?

Reasons for clearance:

• I will know how many lymph nodes were actually affected. (But there is no guarantee that all lymph nodes & surrounding/interconnecting fat will be removed during surgery even though it's called clearance.)
• Oncology treatment (Radiotherapy & or Chemotherapy) can be more customised/targeted?   

Reasons against clearance:

• Risks associated with surgery on already operated site that is healing & associated time for recovery
• Lifelong risk of lymphedema 

@LauraR My CNS mentioned the Optima trial (Prosigna test) when I enquired about OncoType DX testing for my cancer profile, saying she would share more information about this after I had made my decision on Axilla surgery. It sounds like what you were offered, so OncoType DX not being done here either.  I've just found a link to it on the CancerResearchUK website now.

[LauraR]

@TDG 

Hi, I was diagnosed last May, had mastectomy in June, full axillary clearance in August then started chemotherapy in September. Last chemotherapy was 3rd January and then radiotherapy daily for three weeks in February. I started anastrazole in February, then bisphosphonates in March - due to start abemaciclib next week. It's certainly been one hell of a year! I can't say it was easy but it has been do-able so far (but I'm not being complacent - still a way to go with potential side effects).

I was diagnosed with HR +, HER2-ve, ductal cancer after finding a lump. There were three primary tumours - biggest 55mm post surgery (thought to be 35 on ultrasound). There didn't appear to be lymph involvement pre surgery but that changed afterwards so I completely understand when you say about things changing and evolving as you move through consultations/investigations.

Hopefully getting your CT results tomorrow and a plan will help you work out your next moves - always felt a bit better to me when I got my head round what I was doing next/researched what I needed to know. Made the ground feel less shaky.

Good luck tomorrow.

Laura

[Kay0987]

Take anything I say with a healthy grain of salt 🙂 However, I would like to remark that they did remove four sentinel lymph nodes which is a good amount. They only found two with me for instance. Anyway only one of your's was positive. If they do offer you a choice between radiation and axillary lymph node removal or both I think it's very reasonable to just do radiation. However do ask how heavily involved that lymph node was. Like was it micrometastases (under 2 mm) or macro (over 2 mm). How did the lymph node look and feel? You didn't have extra nodal extension so that's great. Anyway if you can avoid axillary lymph node removal it's preferable for healing and long term usage. Lymphedema is a hell of a thing to manage.

And let is know how your results come in tomorrow. I know how stressful this is, how hard it is to keep your head about you and your emotions stable. But once this last piece of info comes in, you'll be on your way to being done with this thing (as far as anyone of us can be done with hormone positive breast cancer). And that's an awesome feeling when you finally get to that point.