Slightly confused here.. I have two lumps in my breast. One is 5.5 cm big and the other is 2.5 cm as per my medical notes They are both her2 positive and grade 3. IDC
My consultant believes it has spread to the lymph nodes in armpit. After chemo having a full mastectomy and possible Axillary clearance.
When I asked what all this meant in terms of the stage? And if positive under arm the stage then
“Oh stage 1, maybe 2. It’s really nothing, not worried”
I’m never shown any real fear, cried or given the impression I can’t handle a real diagnosis but I was under the impression a tumour size as large as mine and possible spread to lymph nodes would be further than stage 1???
Hey bless, sorry for your situation. Have you requested a second opinion? If you are confused your breast care nurse should also be able to help you navigate. Try to be patient for responses (it’s very stressful, I know). I’m unsure if she will have the exact answers, but Dtr Liz O’Riorsan (you tube and podcasts - the breast surgeon with breast cancer) explains an awful lot of all sorts of things on breast cancer - I have found her podcasts and books a really good place to be a little more informed and then to get more out of the questions that I ask.
I have bilateral cancer, small spread to lung, am pending genetics and PET scan. This is my second diagnosis of breast cancer in 6 yrs, so I understand the concerns etc xx
Also sleep is an issue - but my GP has prescribed zopiclone - I only take it on the weekends so that I can have a full strength tablet - I get really good sleep at those times, restorative and wake up feeling rested (not groggy)….for this reason I choose to tackle my ‘cancer’ conversations early in the week as I am clearer of mind etc…
Is the size based on imaging or physical exam? My imaging has been mixed and my bigger tumour is difficult to measure accurately but the biggest number I’ve been given is 5.9cm (with small one 10x8mm plus one definitely involved node and some others that look a bit dubious). I found a very useful tnm staging tool for medical students that helped me assess mine but basically stage 1 is <2.5cm and none in the armpit, 2b would be <5cm and (I think) 1-3 lymph nodes, 3a >5cm with less than 3 nodes or 3b if more than 3 nodes… they may not be keen to give definitive staging until after surgery as that’s when they know for definite what was in there. Mine is triple negative so I’ve mainly read about that but the biggest number study that made immunotherapy standard of care divides patients into stage 1 (no immunotherapy), stage 2-3 (early - follows the new keynote 522 protocol with great results), stage 4 (immunotherapy still an improvement, not possible to fully cure with current treatments but getting better all the time and may have no evidence of disease for months to years). Long story short, is does seem like you’d be above a stage 1 but still “early” and grade 3 cells are more responsive to chemo than lower grade so that’s actually not a bad thing if you’re already in the her2+ group and having the chemo first. I’ve finished my taxane cycles and just had first EC today so far feeling good and imaging and clinical examination show good response to treatment (got to a point hubby could even see it sticking out over FaceTime but now the surgeon described it as “just some thickening” and even the armpit is looking better). I hope this can give you some reassurance that being stage 2 or even 3 doesn’t rule out a great outcome with treatment x
I’m guessing every consultant is different, as is every patient, but I was stage 3 at diagnosis, 6.5cm grade 2 ILC with spread to lymph nodes, so it does sound a bit like your consultant is possibly understating the grade to assuage any worries.
If it feels important to you to know, then a request for clarity or second opinion sounds like it would be helpful.
The BCN nurses here might also be able to help - you can call them on 0808 800 6000 and they are very kind and knowledgeable.
I hope you get the answers you are looking for. Sending you best wishes x
Hey, the size is based on imaging and you can see the largest lump sticking out. I’ve always been under the impression I’m borderline stage 3 which I am, although it may have been meant with kind intentions to make me worry less I think it’s important not to sugarcoat things
Your reply will be really helpful to others, so much useful information here, also sorry to here about your diagnosis but glad things are going well x
I’m glad you got your answer. Everyone is different, but I’m like you in that I’d rather hear it straight. Best of luck with your treatment and take care x
Sounds a lot like mine! Was creepy when it was poking out like a right angle to wave hello but that was gone after maybe 2-3 chemos. It may also be that yours is difficult to measure - I was worried I’d progressed from stage 2 to 3 between diagnosis and treatment as it seemed to take a bit of chasing to get my echocardiogram and my initial introductory appointment for the infusion centre sorted before I could get a date for the first treatment. The radiologist I saw most recently said it’s a difficult shape and the long axis of it doesn’t seem to have changed much comparing any of the scans but since treatment it’s looking thinner and shallower - hopefully it’s kinda deflating as the cells die, I think it’s quite common for a larger tumour to be visible on imaging right up to surgery but it’s dead fibrotic tissue that’s in there so they can’t be sure until they examine it then. The smaller tumour is now too small to measure and the biopsied lymph node now has normal features beginning to be visible again so I’m feeling positive. Do you have a mycare or my chart account? Imaging results take 6 weeks to show but they get there eventually and there’s often a lot more detail than the kiddie version we get told in clinic. There’s also a lot more going on behind the scenes at MDT, specialists I’ve never heard of have commented on my results and some sound very specialised so I think we’re being assessed more thoroughly than it seems from what we see ourselves. Have you got a treatment plan yet? The nhs target is 31 days from diagnosis to starting treatment and then things move quite fast.
In my personal experience, I was drip-fed a lot of the information and was even told the hospital doesn’t always like to refer to stages as such. When I pushed for an answer, I was told it was stage one, but an MRI scan would confirm the exact size as it wasn’t clear on the mammogram or ultrasound. It then became a stage 2 as it was 6.5cm rather than 2.8cm. After surgery, when it was found in the sentinel lymph node, it became stage 3a. ( I then had another operation to remove all the other nodes, which were thankfully clear.) I wish you all the best with your cancer journey and always push for answers to any questions you might have. Xx
Do they downplay? To a degree and I expect for right intentions. Perhaps some patients who might be low stage, low grade etc the consultants know from experience it will respond well to treatment, and perhaps that’s why it “appears” to be downplayed. When we have just been told we have cancer, most of us go down a black hole and our minds think about every worse scenario. Yet the consultant maintains their composed and professional demeanor.
The most annoying thing i consider downplayed is about recurrence rates. I am ER+ and have come across many times about how successful treatments are and the low recurrence rates within 5 years. It’s well documented that ER+ cancers are more likely to recur later than 5 years. So quoting 5 year statistics make it sound great and the impression that after this you’re all clear!
I’m not aware of any lies, but information not shared. Some say not to use Google but without Google I wouldn’t have asked certain questions to get the answers. I too would prefer to know details. I didn’t get told a Stage, and when I asked it was pushed aside, saying the pathology report was more meaningful.
Lastly, I felt my diagnosis was downplayed at the time, but 12 months on and after thinking about your question - life is not the same, but I am alive and my immediate future looks promising. On reflection I dont think my diagnosis was downplayed, it was kept in perspective, and I can now understand that when I think of others who may be in a far worse place.
The largest lump is located in the lower inner quadrant so it’s really easy to see or feel and causes pain in my chest/above what feels like my stomach.
I have a treatment plan now and start chemo at the end of the month
Yeah totally agree. I think most of us just wanna know the facts regardless. At the end of the day there’s a lot we have to go through mentally and physically treatment wise. If I was stage 1 I would be questioning why I have to have a mastectomy, chemo ect
Could be that your hospital isn’t on my care but I’m out in the sticks and I was getting invites to join after the first appointment, you might be able to check by trying to sign up and seeing if your hospital is there otherwise you could ask your nurse. I’ve found it useful for seeing test results and getting the full details from imaging reports and not just the parts the doctors relay to me. Definitely been things on those reports that have never been mentioned!
I haven’t slept properly for years now x