Hi all
I first had BC when I was 38 – 1cm grade 1 ER+, had WLE, ANC (non affected), 15 rads and Tamoxifen for 5yrs. Following a routine mammogram last Nov I was diagnosed with DCIS grade 3 in a different area of the same breast which they said was probably a new primary. Following a long and very frustrating wait I had a MX/recon in Feb. Unfortunately they found 4mm of invasive BC in the area of DCIS (due to the length of time from DX to MX – who knows!). It was grade 2, ER+ 8/8, HER2-.
During the wait for the op I was booked in to have a SNB but the surgeon - who had been on holiday when this was booked – decided not to do this partly because I had previously had the ANC but also because he was 98% sure it was all DCIS. I was told by the BCN that I would have Zoladex injections to put me in the menopause and take Arimidex for 5yrs. When I saw the oncologist, who I must say I didn’t really take to, she was very blasé about everything saying isn’t it good news that its only 4mm (yes it is but I had been told they were 98% sure it was all DCIS) and that I could go on the Zoladex/Arimidex if I wanted to but it wasn’t necessary (ER+ 8/8!!). She said I wouldn’t need any scans to check for spread as it was so small. I was ok with this at the time and relieved that it was all over apart from the hormone therapy but I have now had copies of the letters sent to my GP from the onc in which she calls it a recurrence which worries me a lot. During this time I also had some tenderness in the rib above the reconstruction which the PS registrar was concerned might be secondary BC and he was going to refer me for a bone scan but I was seeing the onc 2 days later so he said to tell her about it. She said she thought it was nothing and that anyway if it was, the treatment would be the same!!! This is a very small area that only hurts when pressed sometimes and not others (I wasn’t concerned about it until the PS registrar said he was as I presumed it was from the op).
What I would like to know is would you all be happy to not have any lymph node info and have no scans or would you push for an MRI or something (does that carry its own risks like a CT scan does?). I know it was a very small area of invasive BC but it is the 2<sup>nd</sup> time I have had it in the same breast and it freaked me out a bit reading that the onc was calling it a recurrence. Surely if it got from the other area of my breast to this area it could have gone somewhere else. By the way the pathology results showed no vascular invasion but the onc said that the cancer cells could travel one day and not the next!!! Lovely woman.
Take care
Lemoncake
Hi Lemoncake
I totally understand where you are coming from here, I was diagnosed initially with DCIS Dec 2008 and was offered immediate reconstruction, the plastic surgeon I wanted was at another hospital so prior to the mx/recon I was seen by another consultant who ordered further biopsies. Anyway to cut a long story short, it was discovered I had grade 3 invasive cancer and 1 lymph involved, also had the DCIS! Had surgery, chemo and rads, tamoxifen. I had no scans as they were confident it was early BC. Had recon nearly two years later, everything looking and feeling good.
In Dec just gone, had mild back ache, had bone scan and guess what? Every spinal bone affected, also skull, pelvis, sternum, right scapula so they changed my hormone tablets to anastrozole, didn’t work, surprise, surprise, it was obvious tamoxifen hadn’t worked due to the extensive spread!! Now have it liver, back on chemo which seems to have reduced some of the tumours there.
I am not trying to scare you here but if someone had given me this advice I would have definitely pushed for scans, you say that you have Grade 2 invasive cancer or have I misunderstood this and it’s Grade 2 DCIS, I ask this as it’s the one thing that would make a huge difference to your treatment plan.
Please feel free to PM at anytime, thinking of you at this time.
Deb x
Hi Lemoncake
Along with the support and shared experiences you have here please don’t forget you are also welcome to call our helpline to talk through your concerns. Lines open 9-5 weekdays and 10-2 Saturdays on 0808 800 6000
Take care
Lucy
Push for a scan hun,otherwise you will always be fearing the worst,put your mind at rest one way or the other,good luck
Di.x
Thank you so much for your replies ladies.
Deb - that is awful - why didn’t they give you scans when it was grade 3 and in 1 node. I thought scans were the norm if any nodes were affected. It must have been such a shock for you in December to find it in your bones/liver - how are you coping?
Mine was 4mm grade 2 invasive within a couple of cms of DCIS. I forgot to say its 12/13yrs since last time I was DX, thats a long time if it is a recurrence isn’t it, it makes much more sense for it to be a new primary. I can understand that I wouldn’t have scans for a 4mm cancer if it was a primary but the fact that they don’t know if its a primary or recurrence and they don’t know if it had gone to any nodes makes me think that I should push for further tests. I also forgot to say that the onc very reluctantly said she would do a blood test (as I was having one anyway to check hormone levels prior to starting Arimidex) to check for any bone activity. I haven’t seen her since but the PS said that the results were ok. Anyone got any idea what this blood test would be called?
Thank you Di for your advice.
Its all such a worry isn’t it?
Lemoncake x
Hi Lemoncake,
Not sure if i can help with your specific question, but if I share my experience (which has some similarities) then it might help you to think about your own position (esp re. your worries about spread.)
Firstly, big hugs to you and support for dealing with b/c all over again.
I had a triple negative b/c in left breast in 2009. Had chemo. WLE and rads. Then in Feb had biltateral mastectomies (long story-do ask). Even though I had been having MRI scans (2), mammograms (2), ultrasound (1, a new cancer found, this time in right breast. It was 1.5cms, grade 3, triple negative - so essentially the same features as first time. Because no changes visible on all scans, and because of relatively short gap I have been told we cant be sure whether this is a ‘new’ primary or it was there all along. I went on to have a SNB which oncolgy wanted to inform decision about chemo and it had spread there. I asked about scans, (which I had first time around), I was told that there would be no point as the tumour was small. I am on chemo again, different protocol.
I understand that you have lost confidence (I think?) due to time gap, and conflicting information and unsympathetic onc. It sounds as though you are most worried about the surgeon’s concerns and I agree with dib, that you need to go back and talk this through more and ask if you want a scan. I must admit hearing Deb’s experience makes me feel very nervous I didnt have bone scans etc, but from what I was told, scans do not always give certainty (look at my experience-albeit of breast).
Debs- thinking of you too.Hope you are doing okay.
I hope this helps a bit - at least it sounds as though there is a similarity in approach re scans being not offered.
Rattles,xx
PS With triple negative (just incase you dont know- you cant have hormone, endocrine therapy etc)
Hi guys, thank you for your kind words.
Lemon cake, I can only think from the blood test you describe is that they are checking for calcium levels in your blood, they can also check bone involvement through LFT (alkaline phosphatase). That said, my levels have only been a little over normal as the bones haven’t broken down enough where it would show in the blood.
Even if they suspect you have a new primary, I still think they should be treating you as recurrence, I would insist on bone and full body ct scan. Easier said I know, but now it’s back you need to know what you are dealing with. You need to know your nodes are clear. Good Luck hon, let us know how you get on.
I didn’t haven’t a scan as that was the hospitals policy, now at another hospital and they are amazed I didn’t. Not sure it would have made much difference in the outcome but would have probably given me more time,
who knows? Anyway, life is good and bad! Good for now as I have a fairly good quality of life, bad that my kids have to go through this.
Chin up as much as you can. Xx
Hi
I would push for scan as the blood test just gives indication…I had high calcium levels which along with pain in rib gave cause for concern re bone mets…luckily my surgeon ordered a whole batch of scans…good luck and let us know how you get on.
Hi ladies thank you so much for your comments, I really appreciate you taking the time to reply to me.
I suppose I am worrying more about it because a friend of mine who had BC 2yrs before I had it last time was found to have extensive mets last year although she had no idea that it had spread until it was too late. When I was told they thought it was a new primary I wasn’t as worried about it but now I keep thinking about my friend and the onc saying mine is a recurrence and just keep wondering what is going on in my body. I am definately going to ask for a scan of some kind. I had a CT scan to check my veins before recon and was told that you get the same radiation as 3000 chest x-rays ugh! Which is best to check for spread - CT/MRI/bone scan?
Take care
Lemoncake
Oh dear whatever happened there, I think there must be a gremlin in the works.
Hi Lemoncake
Have you tried to edit your post? I tried but when i click on edit the post looks completely normal! I will send it to the technical team to see if they can sort it out, apologies
Best wishes
Lucy
Hi Lucy
I have tried to edit my post but as you say it looks normal. Very strange. Thanks for sending it to the techies.
Lemoncake
Hi Lemoncake - it is worrying when they write to your gp and tell them something different from what they have told you and you are right to be concerned. I think if you have worries then you should tell the onc what they are and tell her that you were concerned about the gp letter which seems to be different to what you were told. With regard to scans I know they are reluctant to do scans for the sake of it (not saying that is the case with you) - I know from personal exerience scans cause you extensive worry and concern and when they get the results they are not always sure what the scans are saying - particularly if there are small areas of concern, and sometimes I think they try and talk you out of scans (I don’t think its the cost) I think its that they really don’t feel it would help. However if the PS has also said that he thinks a bone scan should be done then I would push for one - given your level of concern and that you have been told conflicting things then it will at least put your mind at rest. I am sure that you are fine but to get that all clear result will help considerably with you moving on from all this. I do have a pain just below my new reconstructed breast at times - if feels like my bra is too tight (its not) and I really think that its just from the surgery and its all settling down - but I will mention it when I see my onc in a few weeks (the same onc I think) and will see what she says - its all such a worry and whilst our treatment is ‘over’ the worry continues - lots of hugs I have PM’d you too xxx
Hi lemoncake,
Personally I too would ask for a scan and they you would know one way or the other (well, for the most part). If it’s fine, then your mind will be more settled and if there is anything, you will be able to have it dealt with at an early stage. Not easy but…
Don’t know if it is of any help but this is my experience. I was diagnosed with bone mets at the same time as primary, 5 years ago tomorrow. I had chemo first, then a mx but no recon as I didn’t want it, rads, a few months of tamoxifen and then zoladex and arimidex. I too am ER and PR+ 8/8 for both. Each month I also have an IV drip for bone strengthening. Bone scans are done every 6-9 months on average although this time it will be almost 12 months as I have been ok. Recently I have been having some back ache and tingling and suspect the cancer may be spreading in my bones a little bit so I emailed my onc’s secretary and she has spoken to onc who is going to look at either bone or ct or mri or any combination when I see her tomorrow. It is a bit of a worry but I’ve been in this position before and a blast of rads did the trick. Equally it may be muscular pain etc…My blood is tested every month when I have my drip and that has always been fine.
Bear in mind that if you are not 100% happy with your onc etc, you can always ask for a second opinion.
Good luck, Liz
Thanks for your replies Saffronseed and Lizcat
Liz - good luck for your appt today. Let us know how you get on
x
Thanks for your good wishes. Saw registrar, who I’d seen before, and she is ordering an MRI scan to see what might be happening. Go back in 2 weeks for results…Off to Paris next weekend in the meantime!!!
Good luck with the scans and results Lizcat and have a fab time in Paris. You deserve it. Much love and a hug. X
Hi Lemoncake, To be blunt it sounds like the right hand doesn’t know what the left hand is doing, and if it was me, I would be asking my GP to refer me to another hospital (do you have a teaching hospital nearby as they are usually a bit more clued up). I think there are a couple of issues I would query.
(1) If you have ongoing pain in your rib that needs to be checked out, to rule out bone secondaries. Your Oncologist appears to be saying that because you have no lymph node involvement; the cancer appears to be insitu and treatment would be the same anyway there is no need to investigate. The problem with this is that some cancers can spread via the bloodstream, without lymph node involvement, and if you did have secondaries, the treatment wouldn’t be exactly the same - you would also receive bisphosphonates to preserve bone, and you would probably have regular scans to monitor things. If someone did have secondary cancer, and it was left unmonitored, it could go unchecked and become quite serious, so it’s important to rule this out.
(2) Whether you have a new primary or a recurrence, the question I would want answered is why they are not giving treatment with curative intent? You say they are not going to surgically remove the cancer and plan to give you endocrine therapy instead, which is known as palliative treatment. My understanding is that people with primary or local recurrunce are always treated with curative intent, while those with secondary cancer are nearly always treated with palliative intent. So why is this?
(3) With regard to whether its a primary or recurrence: They presumably have done a biopsy, because they know its grade 3, so why cant they compare it with the tissue from your first cancer? I know your first cancer was 13 years ago but the record must still exist.
I hope you can get satisfactory advice soon.
Hi Lemongrove (nice name)
Thanks for your reply. Yes I feel that as you say the right hand doesn’t know what the left hand is doing. I had wondered if I should see if I can be referred to another hospital as there is a university teaching hospital not far away. I think I will see what happens at next weeks onc appt first.
By the way in your reply you say that they are not going to surgically remove the cancer but they did - I had a mx, maybe I didnt explain that properly, also it was the DCIS that was a grade 3 (high) the actual invasive cancer was grade 2, I don’t know if this changes your thoughts.
I am really undecided about what to do about further scans. I don’t want to be exposed unnecessarily to lots of radiation if they really don’t think there is any risk of spread but then again I don’t want to leave it and maybe regret it later. I rang the BCC helpline yesterday to find out which would be the most suitable scan and was advised that an MRI scan often shows up lots of things that are nothing to worry about. I know a CT scan exposes you to a lot of radiation but is a bone scan the same? I forgot to ask the helpline that. i keep thinking that the tenderness in my rib is because of the mx/recon and the amount of work done in that area.
I have asked a few times whether it could be the same cancer as the first time but they tell me that they can’t tell because it was so long ago and they didn’t do the same tests then as they do now!
Take care
Lemoncake
A CAT scan will expose you to radiation but an MRI (Magnetic Resonance Imaging) will not - there is no radiation involved.