Got mammogram results. All good but have heterogeneouly dense and glandular breasts. I’ve had an ultrasound on my right boob only. I’ve asked if that is sufficient if they are dense.
6 Likes
Hi everyone. I hope you’ve all been keeping well.
I’ve just had my 3rd infusion out of 6. I spent the whole time signing up to every complimentary service I could find… these steroids are making me feel like I have so much energy. I’ll crash in two days and probably struggle making any of the dates I’ve signed up for.
Just read through some of the comments about stopping chemo. I honestly don’t think the surgeon would suggest it if they thought it was too risky. My oncologist said they’re losing my dose due to side effects, and weight loss, low mood but he’d stop chemo if the side effects got worse.
@jeml I overheard the nurse talking to a patient who was having their first zolodronic acid fusion today. The nurse did prewarn her that the first can be the hardest and she listed exhaustion and aches as common but seems to be that it gets better. X
3 Likes
Hi @cass2
Have you applied for one of the chemotherapy boxes from Little Lifts?
I received a fantastic box of goodies on a day when the post steroid dip got me. I sat in bed and opened it and scoffed the chocolate so I didn’t have to share it! X
3 Likes
Hi, I’ve applied for one through Shine Bright Foundation the other day. I’m not sure when they’ll be sent out but hoping they have chocolate. If it does I’m going to take a note of your book and scoff it before the kids get the chance to use their annoying magical power of hunting down the chocolate In the house. How have you been?
I went to the beach last weekend. I felt normal. It was such a wonderful feeling. X
3 Likes
@kartoffel proof, if any were needed, that we come out of this as Bionic-Iron-Superwomen. After what we’ve been through, getting your teeth drilled is relaxation. 
@jeml Having a bad cold will definitely have played its part on you feeling exhausted. Good to come on here and share your fears when you are panicking. I know I do!
@Linda_Corinne Brilliant to hear your mammogram results are good but also good to hear you question the ultrasound as we know dense breast tissue needs extra scrutiny. Well done.
Hi @cass2 Sounds like you are steadily and surely getting there. I dropped the ball on applying for a chemotherapy box from Little Lifts. Doh! Please get an extra bar and eat my chocolate for me. Definitely don’t share it with the kids!! I went back to West Wittering last weekend which was the place where I had my beach trip while I was on chemo. It felt very cathartic to visit feeling 100% well again but I also remember feeling like you did and enjoying a bit of normality during that time. Important to get out and about and do lovely things for ourselves whenever we can.
1 Like
Hello. Hope your all doing well. Got my MRI results today and I’m happy to say only the one 36mm lump still there. Not spread to my lymph nodes. Just waiting on my chemo start date to come through now. Did any of you do chemo first? If so how long did it take to come through. Also got the wait for my blood test to see if I’ll have either a lumpectomy or a mastectomy. Xx
4 Likes
Just in case anyone is still struggling with the foot neuropathy (cos I couldn’t bear the compression socks, and am starting to hate normal socks too).
Tried my menthol cream that was prescribed for my thigh nerve pain on my feet instead, my HER2 team suggested it might help the neuropathy. I’m torn cos while it did help a little, it also left me with very cold feet (I need my feet warm to fall asleep).
Will experiment with wearing socks too tonight and see if it works.
I’m really not impressed with my HER2 team though overall. Since my oncologist discharged me I had a sense they wouldn’t be a good substitute and all I kept being told was to talk to my BC nurse about everything I said (the majority of which when I’ve mentioned to my BC nurse in the past they then referred to oncologist anyway), this feels like just adding an additional go-between (one is already too much of a faff). I thought they’d fill the role the oncologist was doing but they just seem to want to palm me off on my BC nurse (only useful thing was the menthol cream recommendation).
They’re going to reduce my Kadcyla cos my last echo was at the low end of normal and any lower thry’ll delay my treatment. They also reckon it could make neuropathy permanent if it’s too high. Thry left it to me to decide to reduce it, I hate when they have us make these decisions, I’m not a flippin doctor. Ugh
1 Like
It’s 130am and I just cannot switch off. So unlike me.”so decided to share my very strange week
I wrote last Wednesday that my op was done and I felt much better than expected. Fast forward to Monday, I go to the GP to get my PICC clean and within 2 hours I’m in hospital 39c temp, shaking like a leaf and vomiting. Turned out cleaning and introduced a bacteria to the PICC line. They managed to get the exact bacteria confirmed this morning and (lucky white heather) it is drug resistant to all but one drug, which I was started on tonight. I will be kept in another couple of days to make sure it is working.
Whilst having the delights of B&B in one hospital in Glasgow, today I was due to attend the hospital I was operated in to have my dressings removed. So off I pop to see my BCN, and before removing the dressing she announces that I have had a full pathological response. Amazing news! Then, that I have been selected as an ideal candidate for a new trial called the ATNEC trial. Now I have decision to make.
- Do I play safe with the tried and tested radio treated to both breasts and my armpit OR
- Do I take part in the trial and only have radio in both breasts and none in my armpit.
I know the worse side effect of radio is the issue with pain and tightness in your underarm plus lymphoedema but will I always have the worry at the back of my head that my squatter will return to my lymph nodes if I do the trial?
I know no one can make this decision but would be keen to hear thoughts for/against this. I can’t help thinking that others bravery has put me in the fortunate position I am
In today, but am I that brave to pay forward without knowing the full risks
Guess I know why my brain is so active tonight……
5 Likes
Good morning ladies, sorry not being active lately on the forum as i am not feeling well at all it’s being 5 weeks post op and still living with swelling breast, the constant pain, my wound not healed and still leaking, 5 weeks of non stop antibiotics that makes me sick now and doc said that he will wait another week if not will have to go back to theatre to remove the implant.
I really don’t want to go back to surgery and the horrible pain of the drain, I don’t know how my breast will look like and how long again will have to wait for my wound to heal and in same time want the infection to end.
I feel trapped in my flat, I barely again have the energy to walk for 15 min and it’s remind me of my chemo days.
Sorry for whining, I really was wishing to come and share with you positive vibes but this road is still bumpy
8 Likes
I had no rads in my armpit then I had a lump near my lymph nodes 6 years later. I guess it depends on if you have any need for rads in your armpit? I didn’t at the time. I now have scarring to my lungs due to rads. I would still go for minimal treatment as rads can cause Lympodema too if done to your armpit. My SLNB was clear 6 years ago so there was no need for rads. Get a second opinion if need be.
Thanks for responding. My heart says ‘do the trial’, my head says ‘take what is known and proven’. I was told I had been passed by them by a BCN who I didn’t know. If it had been my BCN or my surgeon I think I wouldn’t be so torn.
1 Like
Oh gosh @hasnae87 you’re not having much luck 
Hopefully you’ll be able to turn a corner soon & you don’t have to go through more surgery.
4 Likes
Not sharing chocolate is a one of the small guilty pleasures that’s allowed.
My hair is growing back however did a selfie for my railcard and in my striped shirt I looked like a shifty bloke with a receding hairline as it’s thinner and light grey in the temples. I also looked washed out. Used one with steroid flushed face and my glamour puss wig instead. Least I look alive!
I’m no longer wearing anything on my head. Embracing my short hair. People aren’t recognising me. Tad embarrassing when three of them I’ve known for years. One approached a table with a lady with short white hair, another looked over her shoulder for someone else when I spoke to her, the third in as many days didn’t realise it was me even though I addressed her and was calling her!Can be useful though….
Today I saw the oncologist. I forgot to take the list of questions so I typed them up on my phone. Forgot to get that out of my bag. Remembered 6 hours later that I forgot to ask for initial prescription for calcium and vitamin D 
. Not confessed to husband as he will ask why I forgot. Physically feeling better post chemo, covid and surgery but brain not keeping up…. 
3 Likes
Hello lovely ladies, I stayed away from the Internet for a few days it was playing mind games on me again to research stuff. I am more positive today as in one week at this time if everything goes well the motherf***** will be out of my breast together with the DCIS relatives. Even if it’s the beginning and the journey afterwards most likely will serve me the full package I am happy for that step. Then we will see how big it is and what stage and everything should get more clarity before the oncologist and final treatment plan. Has anyone here had a small IDC up to or 5 mm? I am curious what treatment will they offer me. According to NICE guidelines not always they do Phesgo for this size if I am bigger maybe they got me on the trial ech not sure not sure… The waiting for last 6 weeks is teaching my resilience but there are days when I just cannot take it anymore. I hope you are OK, those of you not feeling well atm - sending the biggest hug!
3 Likes
I ultimately chose against the ATNEC trial, I didn’t want any chance of any remaining cancer left present so I asked them to just take all the nodes. Pathology afterwards showed only one showed it’d had it and they class that as no nodes (still don’t understand that, maybe cos the chemo killed it) affected. Do I regret it? I’m not sure. I miss my nodes and the scar isn’t particularly pretty (especially as my surgeon left a little flap that needs fixing, it’s so ugly and catches on my clothes) but mentally I needed to know everything was gone. I wasn’t willing to risk it when it didn’t feel like there was anything in it for me, except anxiety and worry.
I’m an overthinker so I need certainty in my decisions so when that much control was out of my hands I made a drastic decision. They told me they COULD see stuff in my nodes before surgery so I have to live with my decision to be overcautious.
I don’t think I regret it, although the discomfort and after effects of the surgery aren’t ideal, maybe that will change in the future but I just felt it wasn’t something I wanted to risk.
Sending hugs to @hasnae87 and @boobitis , hopefully you’re both going to be doing better very soon.
2 Likes
Yeah, I am leaning the same direction. However, I did have lymph involvement and knew from day one. At the operation last week they took that one lymph node plus 3 others. The lymph node that had cancer was 100% C free and didn’t even show scarring. I had a complete pathological response, which I am grateful for. However, the thought of not getting the radio to my armpit feels almost complacent. Could I go through all this again? I can’t even begin to think about that.
1 Like
Morning. Just a quick question. Did anyone have Chemo first ? If so how long did you wait to get your referral? Just seen it can take up to 6 weeks for an appointment. Thanks x
Hi, i had chemo first, for me it was about a four week wait. The waiting is the hardest part, but you will get through it. All the best for your journey x
2 Likes
Hello, yes, I have IDC of exactly 5mm ( was originally told 3.5mm after pathology but then the paperwork got altered to 5mm !). My IDC was hiding in a 10mm high grade DCIS, which is what the lumpectomy was for. So my intital treatment plan was lumpectomy ( for the DCIC) then 5 days of radiation treatment. However, at pathology the 5mm IDC was found, I was found to be HER2+ ( and ER+, was never told about the other one), so they performed a SLNB, only 2 lymph nodes were removed, as they were fairly confident that the nodes would be clear, wrong, one out of the 2 had 2.5mm cancer, so it just tipped me into maco invasion ( anything under 2mm is classes as micro invasion and if in only one node, you are classed as node negative/clear). So then they requested an Oncotype test, I was only told it was ‘high’ , so at the consultation with the Oncologist, last week, he offered me a CT scan, as he ‘couldn’t guarantee the cancer would not be in any other nodes or elsewhere’, so I had the CT scan yesterday ( very quick and simple). I now have to have 3 cycles of EC ( once every 3 weeks for 3 sessions, so 9 weeks), plus an injection for 3 or 5 days, every 3 weeks, to boost my white blood cells, this is done at home by me/husband, then weekly Paclitaxel, for 12 weeks, together with Phesgo injections ( Herceptin plus something else) for one year, every 3 weeks, but they start with the Paclitaxel. So I start chemotherapy on Monday 1st September, I have had the heart echo scan, all fine. I still have to give blood to be tested and have a Picc line inserted and of course I don’t know what the CT scan will potentially show up and if the results of that , will change this current plan. Good luck with everything, hopefully we will be finished treatment in just under a year 
6 Likes
Oh thanks for your reply and yes hopefully we will be done with this in no time. I hope that once the routine of treatment starts it will be somehow different. My lumoectomy is for 5mm IDC and 1.5 cm of DCIS whoch could reveal some surprises. Nodes are clear as it stands but again the biopsy will show if they are teuly clear. It’s good to know they do Oncotest as I heard usually they do not with Her plus. I will surely keep you posted. I can see from a few responses I had that the surgery very often changes the initial diagnosis as well. Fingers crossed for all of us!
1 Like