Hi Trish,
It’s good to hear you’ve been all clear so far. It’s always reassuring to hear from someone else who was not offered the chemo/Herceptin route that is doing well.
I was told I had high grade DCIS and the HER2+ idc tumour was within this area; they seemed to imply this was a good thing as it was just the one area.
As I had a mastectomy, I didn’t have radiotherapy, but I am three years in with Letrozole which is dreadful and I am counting the days until I can stop. I would love to stop taking it, but I am afraid to risk it to be honest, probably because it was the only treatment offered. After my diagnosis I lost 4 stone (mostly from fright I think!) and I exercise 3 times a week as well as dog walking twice a day. I stopped smoking and cut down on alcohol and eat healthily. All the cancer was removed during my operation so fingers crossed I am doing all I can.
I wish you all the very best - onwards and upwards! xxx
@naughty_boob I’m interested to read about your bladder irritation with Letrozole. That was by far my biggest issue. I tried the vaginal lubricant stuff but it wasn’t enough, then I persuaded my GP to try me on solifenacin and that’s done wonders. He wants me to have a blood test before I can go on repeat prescription. It’s for an overactive bladder/spasm which is how I’d describe my symptoms.
Maybe take a look: Solifenacin – a medicine for treating symptoms of an overactive bladder - NHS
Sending pink love
You’re doing everything right, I’m over in Florida so I’m not on the National health system, they are following the protocol exactly, my oncologist was Greek he was good, I was living in Georgia then, we moved last September, I’m not going to bother getting a another oncologist I don’t see the point, I’ve got my referral for December, I did go to Boca Raton for the last one, the girl was a bit rough and it hurt for a couple of days, so I’ve decided to go to Jupiter Medical I’ve heard great things about them, my new neighbor had ovarian cancer and recommend them highly, also believe it or not the butcher at the supermarket gave me the top surgeon’s phone number as his wife has trouble with large cysts, I may call him before I book my appointment, I’ve seen him on TV his Mother had breast cancer and he seems very caring, we need all the care we can get, it’s no picnic and it’s ongoing.
Another friend in Georgia got ovarian cancer right after me, and is still in treatment, one of the cancers in her lymph node is resistant to the Chemo, she is in a trial for 6 months, I pray this new treatment works for her, she is 75, next door lady is 70 I will take mine any day over theirs, Breast Cancer has come along way, we’re very lucky to have caught it early
I hope you have put the weight back on, stay healthy, all the best,
Trish
Hi I’ve recently been diagnosed with HER2 positive invasive ductal Ca grade 3 All other receptors negative
Tumour < 2 cm so had wide local excision and sentinel node biopsy and tumour margins clear and negative sentinel nodes
As Grade 3 they giving me 12 doses weekly Taxol and 3 weekly Herceptin for year
Had horrendous reaction to first subcut Herceptin injection and ended up in Resus for monitoring as needed Adrenaline - very scary
They going to try it again but iv with hydrocortisone and Piriton first and give very slowly - still very scared about how will react
Oncologist said not happy not giving Herceptin and she hoping next dose will be ok so 
Really find posts very helpful and informative as long journey ahead Sending positive vibes to all xx
I have urge incontinence, can’t fully empty my bladder, need to go frequently especially at night and I used to go to the loo just in case if I was going out (I was told this is really bad). Thanks for the link but as I can’t fully empty my bladder this is not suitable. I had previously met a bladder nurse in perimenopause and had to measure my urine on each occasion. I wasn’t fully emptying my bladder then and had very similar symptoms. I was told to restrict my liquid intake to 2 litres a day and less before bed. Told to ‘hold on’ as long as possible to reduce irritation in the bladder. I have tried to follow this advise, the holding on in the day is easy but at night it’s more problematic. Once I’ve woken with the urge I try to hold on but ultimately I have to go.
The menopause specialist believes it’s menopause related as it’s very similar to what happened before.
Hi @docb
You are having the same regime same. I finished chemo in December and am on 14/18 Herceptin. I had a reduced dose of Paclitaxel due to allergies and had a bad reaction on week 3. They prescribed an antacid, steroid and antihistamine to help prevent any more reactions. Lucky for me no further reactions but the steroids caused terrible insomnia.
Weekly chemo is cumulative, it get harder as time goes on, I had a few good days in the first 6 weeks, then I had 2 good days, with one back in the chair. My cancer centre is 30 miles away and with cold capping I was out for at least 5 1/2 hours up to 7 1/2 hours as they sent me 40 miles away for my last chemotherapy. It doesn’t give you time to do anything.
There is a monthly chemo starters group which is very supportive during your treatment, everyone is on their own individual plan but you can share side effects, prevention of them and treatment to help. Here is the link for June as you say you’ve already started.
Fingers crossed you will have no further reactions.
And obviously we will be with you through your treatment as well.
Hello everyone
I have to say that the gong bath I went to last night definitely did something. My scepticism was fighting with my urge to let go to begin with, but then at some point the sounds just kicked in and it was lovely. I felt utterly chilled by the end and had to go straight to bed. I slept like a log. There is something in it, for sure.
@Flan - Seeing that you are based in the US reminded me that I was told that in the US they will give Herceptin without chemo but not in the UK. I wonder if some of us here in the UK would not have been given chemo if we were allowed to just have the Herceptin? You are quite right in that breast cancer has to be one of the better cancers to get. We are lucky that there is so much good treatment for it now. It really is such a shock to be told you have it, no matter what the age and despite knowing that 1 in 7 women get it. May you stay clear until you are 150! At least.
@docb Welcome and I’m sorry to hear you had such a horrible response. Hopefully they will be prepared next time and your body won’t have such a shock. It’s bad enough without having to suffer an allergic reaction.
@MoonAndWaves I am right with you there on the kicking all my favourite bad habits! I loved my late night wine and soda and 2 cigarettes. I knew it was bad and it used to panic me that I was routinely poisoning myself but I loved it! I am also walking every day, eating healthily and no longer touch alcohol or cigarettes. Could this be why I keep racing as fast as my current haemoglobin levels will allow, down to the Londis just before they shut to buy chewy fruit sweets? Probably. Although by previous standards, this is positively virtuous. If that’s all I am doing wrong then I deserve to be admitted to a nunnery. (But I’d rather not. 
)
@naughty_boob Still no dog. We have a next door neighbour who vaccinates all the rescue dogs for a local rescue centre looking for us now. I have a feeling it may not be too long before I am twisted right round another furry paw.
Happy Monday, all.
Love Salbert
xx
Hello everyone. I’m also HER2+. I’ve had 7 rounds of chemo and just had lumpectomy + total node clearance and am recovering at home. Get my results of surgery on 17th July and hoping for good news. Surgery was much more intense than I had imagined and I’m now 9 days post op and my under arm incision is quite painful still. My biggest problem is diarrhoea. Everything I eat seems to go straight through me. Thought it would settle after chemo but unfortunately not. Then yr mind plays tricks and you start to wonder if cancer has spead elsewhere. The whole thing is such a mind f#*@.
Thank you ladies for such a warm welcome to the forum, it’s really lifting to be in touch with others that know exactly what I’m going through and to pick up tips along my journey.
Let me tell you a bit about myself, I’m 65 years old and live in the Scottish Borders, I’m originally from the NW of England where all my family still live.
You might want to grab yourself a cup of tea before reading further as this is a lengthy story.
26 years ago I had some health issues and ended up with enlarged lymph nodes, I was admitted to hospital for various tests and I had a lymph node in my groin and one from my right armpit removed. Tests came back as inconclusive and eventually my health improved although one lymph node under my right arm remained enlarged (marble sized), I just put it down to the fact that it was the size it was as its neighbouring lymph node had been removed, health professionals didn’t seem concerned when I explained the story behind it.
I’ve regularly attended breast screening and all has been fine up until about 5 years ago when calcification was spotted, however 2 years ago the calcification seemed to have disappeared, or it wasn’t noticed.
Fast forward to March 12th, I was lying in bed and happened to feel under my right arm and to my horror noticed that the marble sized lymph node had increased in size to golf ball sized. How had it got to that size without me noticing. I made an appointment at the doctors and the doctor agreed that it was unusual and contacted the hospital for specialist referral. I wasn’t too concerned as a couple of days later I ended up with a terrible cold and I thought the two were connected
My appointment with the specialist came through for 9th May, so I went along expecting just to have a mammogram and to be given the all clear. The specialist was horrified when he felt the size of the lymph node, it measured 30mm. Several mammograms later they took quite a few biopsies from the right breast and told me I had to come back in 10 days time to see the MacMillan nurse. I left the hospital feeling deflated. 10 days passed and I returned to be told that I had grade 2, HER2 breast cancer in my right breast and also in the lymph node. The following day I was booked in for an MRI scan, a week later a bone scan and CT scan. The MRI showed that there was another area in the same breast (behind the nipple) where there was calcification so they referred me to a different hospital in Edinburgh for further biopsies to be taken using specialist equipment. 2 weeks ago I received a phone call that the 2nd biopsy revealed DCIS but that it wasn’t invasive. An appointment was made for me to have further markers inserted in the DCIS as the markers inserted during the biopsy at the hospital in Edinburgh weren’t compatible with my hospital’s equipment. So last Friday I went for my appointment expecting to have the markers inserted to find that they wanted to take further biopsies as there are other abnormalities. It’s all been rather traumatic and overwhelming as you will all be aware.
In the meantime I’ve started my chemotherapy, which will be every week for 18 weeks, I’m having Paclitaxel and every 3rd week Pertuzumab & Trastuzumab injection, the Oncologist is hoping to include Carboplatin at a later date but I also have a low white blood cell count which needs weekly assessing.
Halfway through the chemotherapy I expect to have another appointment with the surgeon to discuss options, it looks highly likely that it will be a mastectomy followed by radiotherapy.
So this Thursday will be week 3 of my treatment, up to now side effects haven’t been too bad although I’ve had terrible indigestion and constipation.
So in a nutshell that’s my story.
One thing that has brightened my day has been receiving a lovely gift box of goodies from Little Lifts, I spotted the details on this forum – thank you whoever posted the details, it brought a smile to my face
Hi Salbert,
I know of one women who had Herceptin without chemo, she had a 5mm tumor and they did a six month treatment, I’m sure my Doctor would have given it to me if I pushed, I was just happy not to have it, as a matter of fact I was thrilled.
I know of a study in Japan where they were trying it without chemo, I’m sure you could find it if you Google, that was 2 years ago, I’m sure it’s finished by now.
We are self insured, depending on your insurance you can go to who you want and get whatever treatment you feel you need, the first oncologist I saw at the very beginning was dreadful, she wanted to throw the kitchen sink at me, she said I needed chemo radiation, Herceptin, along with surgery, I said No, I will not do chemo and she then told me if I didn’t do everything I would be dead in 2 years, well I ran out of there and never went back, after surgery I was told my tumor was 6mm not 1.6cm which was the original number after biopsy, I was delighted, then I found my oncologist who was near me at the time, he was great, he was pushing the Herceptin before I got the new number, after he said no benefit.
I see you don’t have ER+ so in your case the Herceptin and Chemo is a must, I’ve read so much about Her2+ and if you have ER+ and PR+ and a small tumor the Her2 behaves like a Her2- they say even if a hospital has financial trouble they should always consider giving Herceptin to Her2+ ER- PR- at all cost.
All the best
Trish
Hi @jols68 Welcome, welcome! Lovely pic. That total node clearance certainly makes your eyes water, doesn’t it. My consultant has told me that the mastectomy I am due to have, won’t be as bad as the lumpectomy plus total node clearance combo. It’s a horrid op. I followed the advice of the women on here who had done it and have done my arm exercises every day in the shower and am pleased to report that I have full mobility back now. Hang in there. It does get better. I just have a residual numbness left but I can live with that.
Immodium is our friend. I am in awe of those little capsules. They work wonders. Sadly the diarrhoea hasn’t kept the weight off that I lost through stress. The cakes brought that weight all racing back again when the chemo stopped me from being able to taste savoury and now it won’t budge. But then cakes are lovely and bring me much joy so I’m not giving those up!!
We all know what the mind does, telling you that it’s racing through your body and taunting you with thoughts of recurrence. Since meeting everyone on this thread I have learned that this type of cancer is very common. That’s not to do any of you a disservice for I know that every one here is special and wonderful and amazing and I could go on. But our cancers are common. The fact that there are so many of us with it and the fact that the statistics are so very good with our kind of treatment, means the odds are firmly stacked in our favour. This we must cling on to when those nasty little interlopers try to knock us from shiny perch. Really good luck for 17th July. Keep us posted.
@juxined Hello there! I’m glad you made it over. Aren’t this bunch just grand? (I never use that word but it’s apt!) What a horrid shock that must have been when that lymph node blew up. I remember that pit of the stomach feeling when you first find a symptom. Then for all of us, our fears came true but we are all still here. We lived through that terror and that interminable wait for results and yes, it IS traumatic. Those little lifts in the form of gift boxes from Little Lifts or Look Good, Feel Better, really do help. Stay with us and we’ll continue our journey together. I am counting down the days until my last Paclitaxel and time has never gone more slowly!
@Flan Trish, I’m so interested to know what the stats are for Herceptin alone versus Herceptin + chemo. I may have to get Googling again. I’m horrified that your first oncologist spoke to you in the way she did. Sadly not all of them have people skills that match their medical ones. 
I am supposed to be going to see my brother tonight as it is his birthday but he has just told me he doesn’t think I should come into his pub as he has come down with the cold and cough that everyone around me seems to be getting. This means I have to hand over the large chocolate cake that I have for him at the door and not partake in it. Would it be so bad to carve a large slice out of it beforehand?
Salbert
x
Hi Salbert. Thank you for yr reassuring message. I’ve managed to lose 24lb in weight since diagnosis but expect it will all go back on as I also have a love of cake and every time someone comes to visit they bring eclairs! I’m not complaining of course 
.
Hi @jols68
Welcome to the group. I walk talk to your team about continuing diarrhoea. Mine stopped after a few days with chemo and Herceptin, then once I have Herceptin alone I get a day or two and this is listed as a side effect. It’s not bad enough to take Loperamide/Imodium.
Welcome to our group. I’m so sorry about your diagnosis and the way you have been treated. Not having continuity between hospitals doesn’t help. My surgery team are one hospital and the oncology team in another, it’s not always smooth between the two. I will be thinking of you each week having your chemo. Have you joined the monthly chemo starters group, it was a lifeline for me.
Thanks for sharing as there will be other women who read this thread and say that’s me or that’s happening to me nd our comments will help guide them.
Hi Trish,
I totally get what you are saying about breast cancer and how many advances there has been in the types of treatment; even since I was diagnosed in 2021. I am in the East Midlands in the UK and can’t fault my treatment on the NHS, even though they are really up against it. I had a Diep reconstruction in April 2023 and have just had a date for phase 2 and hopefully that will be the last operation. That just leaves the dreaded Letrozole, but the year after next I will be done with it and hopefully this whole shitshow.
I was really happy to lose the weight, I had plenty of excess! I now have a healthier bmi of 23.
I was interested to hear you say that if you are ER+/PR+ and the tumour is small, then the HER2+ acts in the same way as HER2-. I really hope this is the case!
I really hope things work out for your friend and the trial is successful.
All the very best
x
Yes, why is it that all the things that are enjoyable are bad for you??! I still have a drink or two, but I won’t ever be smoking again. Interestingly like you I now have a very sweet tooth and I’m swiftly developing a sugar addiction! It seems as soon as you suppress one vice, another one pops up …
Hi Salbert,
I just looked through my files, and sorry to say that the Herceptin trial in Japan was for 70 and older who don’t want chemo, from what I see the chemo + Herceptin was the best way to go, Herceptin alone did well but not as well as both together.
You are getting close to your operation, I do hope all goes well, before you know it you will be looking back on like it was ages ago, that’s how fast time goes by.
I wish you all the best,
Take care,
Trish
Thank you Moon and waves!
I thought you might like to read this report for yourself, look up National Institute of Health,clinical differences in triple Positive Operable Cancer Subtypes in Korean Patients.
At the time I wasn’t getting any answers that helped, and this article was very good for me to read, I felt more positive afterwards.
If you come across words you don’t know just Google them.
About gaining weight, I need to lose 3 lbs my husband keeps buying me chocolate, I finally told him to stop, fat is our enemy, I asked my surgeon about sugar, and she said if you were overweight I would say no sugar, I’m quite small and thin and generally don’t have a problem, but when there’s chocolate everywhere I have a problem, I eat it.
Having a few drinks a week is not going to hurt you, I have friends that had BC 25 years ago and only quit drinking while in treatment, and never got a recurrence, there is no evidence that alcohol has anything to do with breast cancer, they just throw everything out there because they don’t have the answers.
There is evidence about fat , my doctor is thin as a wisp her mother and grandmother had it, so she’s doing everything she can to stay healthy, it was because of them she specialized in Breast cancer, that’s all she does.
My husband likes to say you don’t see many fat 80 or 90 year olds, I think being healthy is important I still work in the garden, and work out a few times a week at the club, I also like to walk around the Mall shopping, one Dr friend said just keep moving, and don’t fall down.
I wish you you well,
Trish
Hi all, ive been following this thread, and lots of others actually, but have actually moved over from February starters as they seem to be tailing off now. I had larger tumour diagnosed in January ER -ve, PR -ve, HER2+. Im nearly 68. Ive got four Paclitaxel to go and it seems like its been s long haul, but im counting down now! Side effects have been manageable so far, although i dont do anything except read a lot of books and occasionally meet up with friends and family. My main problem is the diarrhoea which i can usually keep on top of with regular Loperamide, although i did have an horrendous day on Sunday when there was nothing i could do to stop the runs and could not eat either, i got ‘told off’ by team and said i should have called in, i was better by monday though and dont know what caused it, it was Phesgo week but i dont think i have had that reaction before. Talking aboit Phesgo i have assumed i will continue with this after surgery, but i saw on one of these threads that Kadcyla was offered as an alternative and im not sure about that one as it seems like the chemo journey will go on and on, we will just have to see. I havent really discussed what happens next with my consultants as been dealing with things as they come, but im waiting for an MRI so the outcome of that will influence the surgical options. Im happy with the surgical team as i know them through my previous working life. They are onoplastic breast surgeons so i dont have to see a plastic surgeon separately unless i go for a DIEP, which they dont do and i dont think im keen on anyway.
Ive lost a bit of weight, but as someone said ive developef a sweet tooth and eat lots of carbs so it may not stay off, but ive just got to eat what i fancy at the moment.
Hi @pennyp,
Sorry to hear about diarrhoea, I have not suffered from it during chemo so cannot give much advice.
I have 3 paclitaxel left and have had 4 Phesgo injections out of 18 so far. 5th one on Monday :-(.
I am triple positive and was told indeed that I would switch from Phesgo to Kadcyla after surgery, if residual cancer is found which apparently is very likely :-(.
I really don’t like Phesgo but the thought of starting from scratch with 18 rounds of Kadcyla scares me. I can’t see myself with one more year of chemo infusion. I can’t wait to have my picc line removed end of July, and would need another one due to my narrow difficult to find veins. Hoping I won’t have residual cancer but so far I had no response to EC, then partial response to Paclitaxel. My dose was reduced after 1/12 due to dangerous liver function levels. It was getting worse again last Monday when I had my last paclitaxel and my onco did not want to reduce the dose further. I prayed I would not have to go to A&E again!
I am trying not to worry too much about the next steps, and be patient for my MRI scheduled for 25 July. let’s hope my tumours have shrunk more, although I won’t escape a mastectomy unfortunately.
Hope the rest your treatment goes well and that side effects diminish.
Big Hugs,
Marion
@MoonAndWaves Same. I will never smoke again now that I’ve kicked it. My last cigarette was 8th November 2023. I put that cigarette out and had no idea it would be my last. Nothing like a cancer diagnosis to give you a firm kick up the butt where that bad habit is concerned. I will have a drink here and there at special occasions once all this is over but I used to use my nightly wine and soda as a wind down tool before bed and now I have proved to myself that I can go to sleep without it. It would be crazy to go back to habits that don’t ultimately serve me well.
The sugar addiction in its place? That IS a thing, isn’t it! I have not gone racing to the sweet shop for Starburst since they were called Opal Fruits!! As for the cakes, it has to stop. But then, I love them. My weight is creeping up and I don’t want to have enough fat for a DIEP Flap. So far I’ve been told I can’t have one and after so many ops, I just want a simple implant now. The DIEP Flap seems like major surgery but it seems that surgeons favour it over implants. At the moment it’s not an option and I want to keep it that way.
@Flan I probably would have been mighty relieved if you had told me that I could have Herceptin without chemo, but since that option is not available and since I am only one chemo off being done with it, I’m actually really glad I’ve done it now. I feel like I have been thoroughly rinsed through. Good to hear that from what you see, the chemo + Herceptin gets the best results.
Also, great to hear that your friends took up drinking again without recurrence. 
Hi @pennyp Feb Chemo Starters is trailing off now, you’re right. People are finishing chemo. I’ve got 1 Paclitaxel left but I agree, seems a long haul. Sorry to hear about Sunday. That must have been bad if even Loperamide didn’t work. I’ve been chucking lumps of frozen spinach straight into the Nutribullet every morning and only saw yesterday ‘DO NOT EAT RAW’. Oops! Glad to hear you only had one really bad day of it. So you’ve developed the sweet tooth too! I think part of it for me is that I cannot taste savoury. That and the fact that I have to have ONE vice! I’ve given up everything else.
@marionse25 You have had such a rough ride of it that I’m actually going to celebrate the fact that you have been spared the diarrhoea! 