we are doing ok thanks. Pet scan results tomorrow, so crossing our fingers and toes.
how are you getting on with everything?x
yes let’s pray the pet scan result is fine. It’s her birthday on Wednesday, so really hope no bad news to ruin it. Don’t really know anything about fibrosis of the lung, but will cross that bridge if we get 100% confirmation.
Hope you are having a nice weekend x
Good they got back to you quickly. Let's hope the others come back quickly for you.
Waiting is awful isn't it. Keep your own chin up, not easy for the family.
My mum had a ct scan on Wednesday just gone and they rang her with the results a few hours later. They are saying suspected fibrosis on her left lung caused by the radiotherapy. They weren’t 100%, so they booked her in for a pet scan, which she had yesterday. Results in 5-10 days. Bit of a rollercoaster week!
How are you doing? And how are you finding the Paclitaxel? Hope you are feeling well and having no/minimal side effects 🙂 x
I'm so sorry to read that your mum is unwell. It's such a worrying time waiting for appointments then results. Has she been feeling better at all?
I hope you are ok too. It's easy for us patients to offload onto our nearest and dearest. I've had to try and stop doing that because you forget they are struggling too. I had to get medication and counselling...not that it's been effective. Medication helped though and talking to my BCN....think they're fed up with me!!!
Keep in touch if it helps
Glad you are feeling ok.
I also had the worry of no side effects means the chemo isn’t working properly but I think some people just cope better than others.
We are having a bit of a nightmare at the minute as my mum has been referred urgently to the respiratory team as she has had a bit of a chesty cough for a few weeks. First X-ray initially said infection but a second X-ray has shown no improvement, so they are suspicious and sending her for further tests. We are beside ourselves with worry.
oh dear, hopefully it will be ok.
nice to hear from you anyway, have a great weekend. Hope you continue to feel well during chemo x
Thank you for the reply. I’ve been meaning to reply all week but I’ve been all over the place.
The LVI is a good result. I had to look at that up! It’s amazing how much they tell you after surgery….just goes to show how scans are not 100% reliable.
I started Paclitaxol yesterday and feel ok today. I always worry that there’s a connection between lack of side effects = lack of impact. Who knows……
I suspect your Mum is still feeling a bit anxious about it all. I think this is a difficult time once treatment stops and you are left with your own thoughts….
Have a good weekend.
It was only recently actually that we managed to ask someone about lymph nodes as my mum had a follow up appointment a few weeks ago.
There was still active cancer in 4 lymph nodes but also lots of scarring (which we were never told) , so the chemo had done a bit of damage to them after all. There was no signs of LVI, apparently this is a plus also.
She had a full axillary node clearance and so no radiotherapy to the underarm.
My mum was just told to be vigilant around her collar bone area as that is where your next set of lymph nodes are, and god forbid if anything has escaped from her underarm lymph nodes, that might be where it will pop up.
Even though it appeared that the chemo had done very little, upon pathology it was found that 80% of the tumour was dead, although the actual circumference had not reduced in size and upon removal was found to be bigger, but the doctors just put that down to scans not being 100% accurate. Maybe it will be the same for you also. Have you been offered different chemo or is there just talk about going straight to surgery?
My mum was devastated that there had been no shrinkage, but please remain positive as you never know what’s happening inside! Someone once described it to me as a Crunchie. The chocolate being the hard exterior and the honeycomb melting away in the middle. Have you had Paclitaxel? I suspect that is the chemo had did the most damage to my mums tumour.
I hope you are managing ok and have lots of support around you. My heart goes out to every person dealing with cancer.
Have a lovely weekend and please message me anytime x
That's great news. No doubt you are all pleased she is over all treatment and getting back to her usual self. I'm sure it must take a while.
I think I'll be a bit similar to your mum in that chemo did little. Have had EC x4 so far with little shrinkage. How did the onco answer your questions about the lymphatic system and nodes after surgery?
Have a good weekend and wish your mum the best. I'm sure her shoulder pain will ease with time.
Good Morning Steval,
Thankyou for your message.
My mum is doing ok thanks. She finished her treatment in April of this year.
She feels good, just occasional pain in her shoulder from the radiotherapy.
how are you getting on? X
Just reading through some threads and wondering how things are going with your Mum. I am TNBC and just starting chemo...which I don’t think is working. They may skip to surgery
Thankyou for your reply.
I’m struggling to find many people who still had active cancer in lymph nodes after neoadjuvant chemo, it seems we have just been unlucky. As you had yours removed first, chemo will blitz everything else, whereas we are left doubting that chemo worked it still in lymph nodes after finishing chemo.
Hoping the oncologist can offer more information.
I hope you are well and very best of luck for further treatment x
Jaybro's right about not dwelling on the size. I had a Mx and ANC 4 weeks ago and the histology showed lot of difference in size (bigger) from the CT scan. And DCIS. Basically my BC was just not visible on mammogram and inconclusive from ultrasound because it was far back and in very dense (I was told that means young 😎) tissue.
The surgery has removed it and with good margins. The 31 infected lymph nodes out of 48 did their job brilliantly. It was an enlarged one that sent me to my GP so I knew what was coming. CT and bone scans clear.
Anyway, BC and size- all done, parked, my focus now is on chemo - first yesterday.
My first oncologist appointment was reassuring in a funny sort of way, such a different breed to surgeons. My BCN told me to expect that!
Hope you're happier after your mum's appointment.
Wow thankyou for such a detailed and thorough reply.
My mum is very much of the attitude of “I don’t want to know anything, just do what you have to do and get me better”, whereas I’m slightly different and I want to read and know everything.
She is unaware of any statistics. She hasn’t googled or read anything incase she reads something that frightens her.
I like your thinking about the lymph nodes and I actually had that down as one of my questions to ask the oncologist as to whether it was such a bad thing, because surely it just means they’ve done their job?
You are right, it doesn’t matter about the original estimates, although on a scan halfway through chemo, we were told it had reduced in size from 50mm to 43mm, so I was wondering if the estimates had been incorrect both times? But as you say, it’s all been removed now, so it doesn’t change anything.
No further treatments have been discussed besides radiotherapy so far, but my mum has an appointment with her oncologist next week, so hoping we will have more of an idea.
How long has it been since your treatment? And were you triple negative also or another type?
I hope you are keeping well and doing great xx
thanks for your reply.
My mum will be having radiotherapy, but not sure on anything else. She has an appointment with her oncologist next week, so hopefully will find out more information.
I’d like her to have everything they can give her, but I think my mum is tired now and just wants the treatment to be finished, so we will see.
Have you finished all your treatment now? I hope you are doing well and feeling great! Xx
It must be very hard to support a parent through something like breast cancer (though my mother had it twice and failed to mention the first till she’d almost finished treatment - she was of that hardy generation who “didn’t make a fuss”!!!). I’m so glad she wasn’t around when I was diagnosed at 67. She’d have blamed herself. What does your mother feel about all the statistics? Perhaps she has adopted the approach I adopted - head down, get through it, ask as few questions as possible and trust the experts.
I just wanted to say that radiotherapy makes a significant difference. My oncologist maintained it was the most effective of all the treatments - this was halfway through the most awful experience with chemo so his pronouncement wasn't well-received at the time!
The other thing I wanted to comment on was about “cancer in the lymphatic system.” It seems to me that that is a healthy thing. I had 19 out of 21 lymph nodes infected but no tests have revealed any spread beyond. Thank god for lymph nodes. They are there to catch and contain infection and that’s what they’ve done. Maybe you could change your perspective and, instead of seeing it as a threat, see it as your mother’s body acting as it should when under such a ruthless attack.
I accept I may be being naive but does it matter that the original estimates were out? The fact is, now she has had her mastectomy and axillary clearance, your mother is cancer-free and that’s something to be celebrated (though, having gone through the same gruelling chemo regimen as her, she may not feel like celebrating yet!). She has further adjuvant treatment ahead to reinforce the chemo, plus she’ll be started on an AI for 5 or 10 years and maybe have zometa infusions every 6 months. It’s gruelling but it seems to work. Worrying about her prognosis and % improvements in tumours that were removed with clear margins (and I suspect you’re looking into potential survival rates?) isn't going to help you, let alone your poor mother. Try to trust the experience of your mother’s MDT?
No one has a guarantee that cancer treatment is going to work/going to keep one cancer-free for the rest of one’s life. We really have to live with hope. This feels a bit sanctimonious, for which I apologise, but it does reflect how I feel - if the results show the treatments are working, be glad and don't waste precious energy fretting about what you can do nothing to change.
I wish your mother all the best with her radiotherapy. If it helps, I found it a doddle after chemo xx
Hi. I had my mastectomy and axillary clearance at the beginning of January. Before, my consultant and surgeon had said they were pleased with my progress and my lump felt smaller. But apparently when they took out the tumour there was a 'significant' amount of active cancer cells, which meant i had only had a partial response to chemo. I couldn't understand it either because the tumour felt smaller! I'm classed as high risk of recurrence. But I think it's good that they got clear margins for your mum and radiotherapy should hopefully clear any cells that could be left over. That's what I was told! Will she be having any other treatment too?
So my mum was diagnosed with TNBC last July. Tumour was 5cm and 2 suspected positive lymph nodes. She completed neoadjuvant chemo of 9 x weekly PC and 3 cycles of EC chemo. She had an MRI scan halfway through and the tumour (after 9 weekly PC) had only shrunk by 5 mm, which we were a bit upset about.
After chemo, she had a single mastectomy and full axillary node clearance.
Today we received the results from the pathology report, and the tumour was actually 6 cm, and 4/18 lymph nodes contained cancer. 80% of the tumour was dead, with 20% residual, and they got clear margins.
Not sure how to feel about these results. I'm thinking either they got the measurements of 5cm incorrect, or the tumour grew during EC chemo, and also spread to more lymph nodes?
I'm pleased about the clear margins, but also struggling to understand how the volume can decrease by 80%, but it can also grow at the same time?? all very confusing.
It has been suggested radiotherapy next for chest wall and collar bone, but no mention of Xeloda/Capecitabine, which I thought was given for residual cancer.
Everyone I have spoken to have replied with a sorry/pity look on their face and I'm worried this does not provide a good outlook for the future, especially as cancer in lymphatic system.
Any advice/positive stories of something similar?
Thanks 🙂 x