Hello
First time starting a post, i have responded to others.
My journey started after routine mammogram in August. Brief history: er+, pr+ HER2-, 37mm grade 3 IDC in left breast. WLE in October with clear margins and nodes. No chemo. Just had my first radiotherapy session of five today.
All seems very straightforward.
Before i was diagnosed I was feeling rib pain in left ribs and left shoulder pain.
I dismissed them for ages. I am 54 and was on all HRT available until diagnosis. Then it dawned on me this could be related to breast cancer. Could i have bone mets? The symptoms match everything i have read. Worsening and more consistent since they began and mainly at night. New pains have developed in back and femurs but i could dismiss this as coming off hrt. I am in menopause. I told breast team and was seen this morning in clinic after 3 weeks waiting in a state of worry over Christmas only to be told they can’t find anything wrong after examining my breasts ?? and doing an ultrasound ??? (Ultrasound no good for bones) . I was told if my margins are clear and no nodes affected i can’t possibly have it in my bones as that is so rare! I asked about vascular invasion but its sort of dismissed. Because im worried they referred me for a bone scan within 3 weeks which is something i am very grateful for. I know I am in pain, it is matching symptoms but feel a bit dismissed by the professionals. Please anyone got experience they’re willing to share with any sort of outcome. I hate not knowing and feeling like im making a fuss. Thank you so much for your time xx
Gosh. The last thing I would want to do is cause you anymore fear because yes, it would be uncommon to have a metastasis with no lymph node involvement. However, uncommon does not mean rare. Breast cancer unfortunately can travel very early through blood vessels before detection by scan or touch and those cells can wreak havoc later on. So in saying that, if you were told that you couldn’t possibly have it in your bones just because it wasn’t in your lymph nodes, that is 100% wrong. It wouldn’t be common but breast cancer is weird and is known for doing uncommon things. You are definitely doing the right thing by going for a bone scan but don’t jump off the ledge with it. It truly is more likely to be something else considering you had to go off of HRT I’m sure quite suddenly.
Are you taking letrozole and did you have any sentinel nodes removed?
I had grade 2 IDC, DCIS in both breasts and double mastectomy in July - clear nodes.
I have bad shoulder pain, worse on the side which had three sentinels compared to the one on the other which I think is from cording and the op in general.
I have also had leg and back pain, and ribs, and a big toe, which I think may be connected to letrozole and I’m having acupuncture to try and help.
Thank you for the replies. I am due to start Anastrozole i think its called.
I prefer straight talking so don’t worry about telling me as it is. I am grateful for your points of view. I just don’t want to be a person who is missed.
Xx
I have convinced myself that a spot on my mastectomy scar was secondaries and a pain in my rib and now a pain in my back - so I totally get your worry.
The truth is I think I had lots of these pains before my diagnosis (I’m 53) and I probably didn’t bat an eyelid and put it down to being older… and my spot went away!
Hi @square-boob
I’ve not had any other symptoms before diagnosis. Most people get aches and pains, and you don’t think anything about it at the time just a way of life…….but then something like this comes along and it does make you rethink everything.
I also have LVI and like you it was played off as not important (despite it being well reported throu official web sites). It was the main reason I wanted chemo, but was refused. My fear, like so many, is that it has escaped and you don’t know about it until too late. I’m thinking maybe I should push for a body scan when I see oncologists in a few weeks.
I hope your scan goes well and no unpleasant results. Take care x
Hi Sal! I am actually talking to someone right now on reddit who pushed for a scan and now they have to do a bunch of others to make sure something they found in the first scan wasn’t cancer. The chances that it’s fine are like almost certain but that’s the way it is when an incidental finding comes up after you’ve had cancer. It’s like opening up a Pandora’s box. I’m not telling you not to ask for a scan but you should be aware that a lot of times it leads to major stress for no reason at all. For me, I go by the mantra that if it isn’t bothering me I don’t need to know about it. There is no such thing as catching a stage 4 diagnosis early anyway.
This is a bit like how I feel.
I’m still just a few months post mastectomy and start of 10 years of letrozole and going into panics about every little thing. My husband keeps saying to go to the docs if I’m worried but in reality, I would be there every week with my headache, sore back, sore ribs, spot on scar…
I know that if I was to have a scan a multitude of other things would show up whether they be good or bad, and I’d be opening a Pandora’s box every time.
Lots of similarities here. Also 54, was on HRT before diagnosis (middle of September), have had lumpectomy and full auxiliary clearance. Since coming off HRT I have felt really, really achy…have also noticed an aching shoulder on the side of my surgery (particularly whilst laying in bed) for months now and really struggling to get up from a sitting position whilst on the floor. Haven’t started hormone blockers yet, so can’t place the blame there. I definitely think it’s down to HRT cold turkey.
Please don’t take this the wrong way (because my intention is to reassure) but I have taken comfort from your post. Okay, so yes, it is possible there could be spread, but is this likely? Of course not. BC messes with your head to such an extreme it’s hard to see the wood for the trees. This is exactly how I was feeling at the start of the week…6 weeks post surgery, my breast suddenly looks and feels different and part of me is convinced the cancer is back, even though logically I know this isn’t likely. The terror is real though. Turns out scar tissue is the culprit so panic over.
It’s brilliant you are getting a scan. Well done you. You are so not alone. I am sending you loads of strength and very good wishes xxx
@Kay0987
Absolutely agree about the Pandoras Box effect and of course stage 4 is stage 4. I very much doubt NHS would offer a scan without any other symptoms anyway but the LVI really nags me.
Im sure I would be distraught if something was discovered. But any recurrence or spread is better managed or controlled when it’s smaller - hence it’s better to know sooner than later.
I still believe it’s better to diagnose stage 4 as early as possible, and even if it’s not the case, if you have pain and suspect metastasis, it’s a good idea to get a scan. Worst-case scenario, it confirms your fears and you get treated; best-case, you’re wrong and you have a peace of mind—at least that’s how I see it. Personally, I had a CT scan before my surgery that didn’t show any metastasis, but the histopath results after surgery revealed that the cancer was locally advanced (with 7 LN involved), so there may have been micro-metastases that weren’t detected by the scan. Hopefully, chemo addressed that, but there’s no way to know for sure. For my peace of mind, I’d like to have another CT scan, and I just need to discuss with my oncologist when the best time would be. But I do know I want one
Hi everyone
I love this forum and how it brings us together with our experiences. I am not afraid of a pandoras box as i like to know what is going on with me. I don’t want to waste time and resources of an already stretched system but I will take whatever I can get if it tells me I’m fit and well or not.
I can’t believe it but i already have my bone scan appointment come through for Wednesday 08/01. Super quick which is great service and less worry time for me.
I am going to sort my head and out about how I worry. My focus for the next few days is my five days of radiation. On day two and feeling very tired already which I wasn’t expecting so soon. Writing this from my bed!
Hi,
I was diagnosed with high grade,DCIS in Sept I was asvised to come off HRT immediately.After my second surgery to clear margins I was placed on Letrozole and Calcium medication, I was also sent for a bone scan.
I have been told as the Letrozole can affect bone density they needed to do a base scan then I will be scanned every 2 years to see how my bones are coping.I presumed eveyone would recieve the same treatment?
I have also had awful joint and muscle pain most days . I am hoping over the next few months this settles.
I wish you all the best going foward
Hi @jules1963 it’s standard procedure to have a DEXA scan every two years to check for osteopenia or osteoporosis when you are on an aromatase inhibitor. In fact I have my second DEXA on Tuesday two and a half years into Letrozole. I am 69 now so expect that there will be some deterioration as there probably would have been even without the AI due to age. Unfortunately joint and muscle discomfort is a common side effect of Letrozole although, for some, it settles down after a few months. If it continues and is debilitating, speak to your BC nurse as there are alternatives that can be tried.