Question re delay and lymph nodes

[Kmk66]

Its a hard one to call for you with when the op will be done. Not wanting to put you in a panic but when the medical team have told me a time scale for results or next stage it has been longer than they have said. For example I was told 2 weeks for biopsy results from surgery and it was 3. 6 weeks for rads to start and it was 9.  

At at the very beginning of my treatment I delayed my surgery for 2 weeks as I had plans and I wanted to feel well which took me out of the NICE guidelines but it worked better for me. The team were happy for me to do this but I was grade 1 with a rare cancer that was slow growing. My lump was 15mm at biopsy stage and 7 weeks later at removable, it was 17mm so not grown much at all. 

After my lumpectomy, I was began to feel more normal and able to drive at 3 weeks (got infection and seroma) and I wouldn't have wanted to have been on holiday. Do you have an option to delay your holiday slightly? Give yourself an extra 2 weeks? Or speak to your BCN again and look at delaying the surgery so you can do something nice before you are ruled by hospital appointments. 

[Cesrabbit]

Although my diagnosis was different I was diagnosed beginning of May last year, waited until 22 June for lumpectomy, had results on 8th July (grade one er8/pr8) went on hols on August 1st then didn't have rads until end of October! This suited hospital as they were 'overwhelmed' with bc cases last year and the Rad Dept was so so busy. I was told all along that the wait wouldn't have had an adverse effect. Incidentally a friend of mine went private and saw top Breadst Cancer Prof in Harley Street. She was operated on before Xmas and waited until April for her rads as he wanted her to have use of 'top machine' (whatever that is). She was a grade 2 idc. No lymph involvement. She holidayed in between too.

[Sue H-S]

Hi again, Ok - you are very right, the result can change - as it is an invasive - the lump can be small - as it was with mine, but the tentacles can have a bigger spread - which will be the final spread. If they have requested the And you are right, too the MRI results are important for the surgeon to decide on the op, too. When you have your op, it can be a day case or an overnighter. They will very likely do a sentinal node biopsy, too - which means they will take 3 nodes out of your arm, which they will test, too, even if it looks as if they are clear after the MRI. Recovery will be about 2 weeks, before you are able to drive, etc. and use your arm more or less properly again. You will also need a supportive bra, a sports bra, preferably front opening, will be ok - but it should not have any metal or plastic support in it, it could be uncomfortable. The final pathology results will also take about 2 weeks to come back and the surgeon will likely want to see you to see how you are healing and deliver the results. You may feel a little sore under the arm, which is usually more uncomfortable that the operation site. And of course you have to do the exercises to ensure you regain full functionality of the arm. You may also feel a little more tired for a number of weeks, as your body will need to heal. So looking at all of that it would be cutting it very close to still do your holiday. And of course, not knowing whether you are flying or not and whether it is an active holiday........you might not feel up to it although it would be a nice reward for having got through that stage of the treatment. So if we say - 1 week to MRI (fingers crossed) 2 weeks for results, 2 weeks for op, 2 weeks for recovery and final results - that may give you your answer as to you holiday. I am just wondering, whether you can postpone the holiday to take that pressure off you whilst working through the initial treatment and plan to have it just after your surgery recovery and before the start of your follow up treatment? In theory, once MRI result are in and operation day set - they should give you a timetable with future appointments with regards to results, etc, before you see your oncologist for follow up treatment and would suggest you ask for it and give the reason that you are planning a holiday - as they should be able to set all of those appointments in advance. My oncologist appointment was 2 weeks after pathology results and we then decided on start date of follow up treatment. Please remember that you cannot use the arm on the side of the operation in the future for taking bloods, injections and blood pressure readings. You should also try to avoid injuries to the arm - reason is to avoid increasing the risk of lymphedema. xxx

[Powdow]

Sue hi again, I read your most recent comments after I had spoken to nurse.
So I am ER+ PR+ and HER2-. This nurse said I can't see them allowing you to wait until after your holiday for surgery, so I told her that is different information than what I was told last Thursday, then she kind of backtracked and said that it will all be done and finished by the time you go on holiday. At this point I thought fine, if it's just a lumpectomy I'll have about 3 weeks before holiday so hopefully would be fine, but now I'm remembering they said at least a week for MRI results. So that would be taking me into mid June, my holiday is first two weeks in July.
Anyway she said my risk is very very small, as not even a palpable lump. I know this could all change after surgery.
MRI for Monday 30th May. I'm just going to wait and see result from that.
I felt the nurse was helpful but not helpful, I wouldn't feel comfortable phoning her again until after MRI.
To be honest, it's not that I definitely want to go on my holiday, if I have to cancel that's fine, it's the not having a clue until perhaps 2 weeks before!! That and the confusing information so far

[Sue H-S]

Hi again Powdow, when you talk to your nurse - get her to tell you exactly what they have established so far. And ask her re your holiday, too - that will be important. I would guess - but it is a real guess - that if you are HER2- (negative) , but ER+ or PR +, they may be able to start you on the relative hormone treatment to start stopping the receptors. They did this with me - so I could delay surgery for a month. But you need to ask! xxx

[Powdow]

Sue thanks once again.
The lady who delivered my biopsy results was just introduced as Dr...., that was at the breast clinic, like you, where I was referred after my routine mammogram (my very 1st one). Then everything was transferred over to the hospital where I was assigned a bc nurse and I met with my surgeon. I am assuming that will be my surgeon, I was certainly led to believe that, but it is one of the things I will clarify with my nurse who I will hopefully get a hold of today.
As for the MRI - I may be wrong but I feel there has been an error there, as the Dr at the breast clinic definitely said MRI appointment was for last Thursday (my husband was with me and he clarifies that) but hey ho, it's past now and I guess I just have to wait for an appointment.
I do understand that it all changes or can change as they do each stage of testing and that final diagnosis is done after surgery, but I'd like to have a bit more clarification on what they know so far.
Surgeon had pencilled in surgery for beginning of June, no definite decision made as obviously would depend on MRI results and also depending on that, whether I'd hold off till after my holiday or just cancel holiday. I was told (by breast clinic) that MRI results can be at least a week, so as the end of May is next week, I can't see surgery happening beginning of June now anyway!!

[Sue H-S]

Hi Powdow, I certainly get the jist. Phew!!! It appears different regions deal with breast cancer care in different ways. We have a breast care centre in Brighton - and after first routine mammogram was referred there. Have one BC nurse assigned and her stand in, when she is not there, has met with me and is also fully aware of my case. When I got my biopsy result, I was given them by a surgeon, accompanied by my BC nurse. He decided on the request for MRI, so he could judge the type of operation better and because all is connected by computers - requested the MRI scan there and then, which came through via appointment letter. So I am not sure whether your breast clinic doctor is also your surgeon. Little tip - if an appointment comes through for your breast cancer surgeon - ensure you always see the same one. I changed appointments once, to ensure I did. Sometimes things get lost 'in translation' as you have to take so much information in and it can certainly be baffling and confusing. You are absolutely right - taking a piece of paper and writing the questions down, which you wish to ask is a great help - and then write down the answers to the questions, too. So you can go over them when you talk to your BC nurse afterwards and when you are at home. Also - everything you are being told with regards to the diagnosis of your cancer is provisional - and you will get more information as you go through the process. You will only have your final diagnosis after your operation when the removed bits have been sent to the pathology lab. It may take up to 2-3 weeks after your op to have those results. Although your team may indicate what treatments are likely after your operation - only after these will the definitive follow up treatment plan be discussed.In my case these results were delivered by my surgeon, as he also wanted to check up on his work, lol. Great guy! Once all is ok with your surgeon you are then likely to be referred to an Oncologist. Again to discuss your pathology results in much detail and then the options and best choice of your treatment plan. You should know by now your type of cancer - you do. Receptors and likely stage and grade - you are not sure on these - call your BC nurse, if necessary leave a message on their answer phone. They will get back to you and should tell you - so take notes when they do. Hope this helps - xx

[Powdow]

Sorry just read back my text and some is a bit garbled, just trying to do it quickly on my phone but hope you get the jist!

[Powdow]

Sue, yes I had 3 biopsies taken. I feel there has been a couple of contradictions in what I was told by Dr at breast clinic then what I was told by surgeon at hospital. Firstly Breast clinic Dr said I wouldn't need herceptin (obv not her2+)and ly mri was booked for 12may and I would also talk with my surgeon.
Went to 12th May appt, chatting with surgeon then she talked about booking in MRI, I asked was I not having it today as that was what I was led to believe - oh no we are going to request it today. Also when I arrived at appt with surgeon, she started to tell me about biopsy results as if I hadn't heard the result? Then later finishing off with bc nurse (she was lovely but not the one assigned as she was on holiday) she gave me the booklet and said I've marked off the sections that are relevant to you, and one of them was Herc2 ( I may have the abbreviations wrong as I don't have it to hand but I know you know what I mean).
Surgeon also said my levels of oestrogen and progesterone were at the highest levels, I replied oh that's bad isn't it? She said no it's good as means the cells are as close to normal cells as could be. All about confused as nurse also marked out eo+ and Pr+ as bits to read.
I've tried calling my nurse but just answering machine so will try 2m when off work. Going to ask these questions, will she be able to tell me or will I get hit with - "you'll have to ask Dr.... About this, just write down all your questions"?

[Sue H-S]

Hi again,
I do not want to contradict anything, that has been said. A lobular invasive can be any grade and stage - there is no usual..... You should have details of your biopsy - have you had one? That should give an indication of stage, grade and receptors - they are all factors as to speed of growth, etc. Have you an assigned breast cancer nurse? You can talk to her - and she can tell you and advise.

[Powdow]

Surgeon said when asked that they don't know for def but lobular is usually grade 2. Didn't say anything about stage. It's frustrating the liability thing though isn't it. I feel they are so pan faced and you really sometimes just wonder the worst anyway. I can't remember if they said it it read it on here but lobular is slow growing? Again don't know if they mentioned it.
its so confusing at times!

[Sue H-S]

Hi again, yes you should and also ask them how fast, they think the cancer is growing. I would hazard a guess that they cannot give you any firm answers - it would make them liable, if nothing else. Have they told you which grade and stage they think you are after your biopsy? xx

[Powdow]

Thanks Sue that was good to read. I will ask the question re lymph nodes as not really getting it. Thanks

[Sue H-S]

Hi Powdow, I don't think there is an answer to it, as such. If you have had a biopsy, then they can judge how fast the cancer grows/spreads. As I have had lobular invasive, too - my early story may put your mind at rest, but as always - we are all different from each other and how our body reacts and works. On my mammogram and ultrasound it appeared to be 20mm lump with the tentacles reaching out a little further. Nodes appeared to be clear. After the MRI scan thought to be 30mm big, nodes still appeared to be clear. I, in discussion with the surgeon delayed my operation by 4 weeks, due to work circumstances. So my operation was about 8 weeks after my MRI. The pathology results after the op confirm the final diagnosis, size and grade. As it turned out it was larger than anticipated, but the nodes were confirmed as clear. The challenge with an invasive, is that the MRI cannot necessarily pick up all of the strands/tentacles, as some may only be single cell strands. My oncologist was told me that the size difference was not due to the wait, but simply because of above reason. Remember, if you are really concerned, you can ask for a second opinion! xxx

[Powdow]

Ps I'm more querying the fact for delaying surgery myself - not at that stage yet to make decision as will be after MRI, just trying to get my head around the lymph mode issue so I'm prepared.
I'm actually fairly relaxed or as relaxed as can be, I am enjoying the fact that I am still living a normal treatment free life at the moment, so not getting hung up too much on things but just researching a wee bit.

[Powdow]

Thanks Ann.

I'm just a bit confused re it going into lymph nodes. When does this happen? It's just that they have said to me "this didnt happen overnight its not going to change overnight, so if you wanted to leave surgery till after your holiday, that wouldn't worry us" - so ok I get that the cancer size is not going to change dramatically in a few weeks time, but how do they know it won't be in lymph nodes today but could be tomorrow?? I'm just not understanding that bit?

[ann-m]

Hi powdow,

I found the worst bit was waiting for the MRI & then the results as my initial biopsy showed a small area of lobular with ductal. Try not to worry about any delay, it's easy for the mind to go into overdrive, as mine did, when going through investigations. It's good that the ultrasound was clear, mine was clear as well & so it proved on the MRI.  My husband was very good at reassuring me that the MRI would get to the bottom of the problem so that my treatment plan would be the best one possible.

ann

xxx

[Powdow]

Ok so I'm waiting for MRI to find out full extent. At present been told lobular 11mm, underarm looked clear on ultrasound.
Talking about surgery v holidays and nurse said if I was to wait they wouldn't have a worry there. I've still to get MRI soot still could be in lymph nodes, and I get the waiting re it doesn't grow bigger overnight, but how do the know it won't move into lymph nodes in the delay?