HER2+ and need some buddies

[naughty_boob]

Hi @priscilla84 or should I say Ciao.

I love Italy, it was the last place I had been overseas since Covid hit, I was in Naples 3 weeks before U.K. lockdown and the Italians were taking temperatures and giving information, whereas my return to the U.K. was nothing. It was a vibrant city if a little dirty, but it had character, totally different to Bologna, Venice, Florence, Siena, Pisa, Luca, Montecatini Terme/Alto (this is a gem in Tuscany with good access to other places in the area).

Being HER2+ I thought the worse as its aggressive but was to,d by the oncologist that in 10 years times I would be looking back on this time as a blip. I’m hoping that’s the case because we don’t know what will happen. It’s always a worry of recurrence or secondary. But life is for living, I’m trying to be more glass half full than empty (as I was before). We never know what is around the corner.

I wish you every success with your treatment

[priscilla84]

Hi @naughty_boob I’m sorry you saw a slightly dirty part of Italy but I have to admit that we Italians are a bit careless about certain things and that’s not good but luckily everything isn’t like that everywhere. I went to the UK many years ago and love it…I plan to return with my daughter.You are all right that you have to live life and see the glass as half full (even my eight year old daughter tells me this ) and this has an effect. It all happened so quickly that I didn’t have a chance to process it straight away and then as soon as I received the news in May that I had to have chemo, my world collapsed on me… moreover, they did a mastectomy on my right breast in April and now the expander broke and therefore a new operation to put the prosthesis…in short, you can never rest easy…my breast specialist followed me throughout the process and she is very confident in this therapy and often scolds me of being too pessimistic and starting to be more positive… after all, negativity calls for more negativity… you girls are all wonderful, you have given me so much strength and I really hope to be able to put this year around the corner. …but I believe it won’t be a wasted year but a good investment for my future

[browneyes]

Do any of you lovely HER2 positive ladies have a lung nodule? What is your experience with this and what was outcome?

I have completed active treatment however we are monitoring a lung nodule which I am in a panic about. Seems like the fear never ends.

The nodule was found on a lung CT scan in May, and the report had said it was a "questionable non-specific 7mm mixed density perifissural nodule which may represent atelectasis or volume averaging. Due to history of cancer, follow up CT is recommended." Just the wording of this terrifies me!

My oncologist is not worried and has reassured me that he is expecting my next CT to show it to be a benign incidental finding, however I am full of anxiety over this.

Also, I have been getting mild headaches almost daily for the last few weeks. Could it be a side effect from either Herceptin or Anastrozole??

About me:
Diagnosed with Invasive Ductal Carcinoma, HER2 positive, estrogen positive breast cancer in January 2024. Biopsy on breast lump and at least 3 lymph nodes all confirm cancer.

Stage 2, grade 2. My lump was 18 mm and I had 3 lymph nodes involved with the largest two being 29mm and 12mm, with multiple tiny abnormal nodes surrounding the larger ones. I was 53 years old at diagnoses and post-menopausal.

I have completed chemo treatments, lumpectomy and full lymph node dissection and 19 doses of radiation. Had a pathologic complete response to chemo except for a 24mm area of DCIS, which was removed with a 5 mm margin.

I am now continuing with Herceptin infusions every 3 weeks up to a year and daily Anastrozole for 5 years.

[naughty_boob]

Hi @browneyes

I haven’t had any experience with lung nodules and don’t remember reading anything on this thread.

Maybe you could call the BCN nurses to get their input?

• Helpline: 0808 800 6000 (Mon-Fri 9am-4pm; Sat 9am-1pm). Speak to our trained helpline team. No questions are too big or too small.
• Ask Our Nurses: You can message our nurses here on the forum, or confidentially. Whatever you prefer

I hope your treatment and all follow up checks are ok.

[chakakhan]

Hello Brown Eyes,

I am sorry I do not have any knowledge of lung nodules but I have an area in my spine that was found on a scan and required further investigation.

The findings were inconclusive on the next scan and it hurts sometimes but I was told to continue treatment and further investigations and monitoring would be done afterwards.

They are being extra vigilant which is the right thing to do.
However it does not stop the worry and I spoke to MacMillan on the phone about this who were very supportive. (0808 808 0000 8am-8pm 7 days week)

Best wishes Xx

[Linda_Corinne]

Yes I have 2 but they said they will go with the chemo and may be normal for me. I am having a CT in 3 months from diagnosis which is November. I am getting headaches too but I hope it’s just being dehydrated. I had cancer 6 years ago and it’s now in my axilla but not my nodes although they are doing a clearance. I was told if it came back they may not be able to operate there and also she will feel them when operating to decide re removal. I was told no point worrying re the nodules as your mind will go to lots of places and you won’t sleep which is no good so am trying to do that. I was told it may or may not recur again. They have been mentioned but are quite common if you are over 50.

[chakakhan]

Hello everybody,

I received a letter from my surgeon that was written pre op and is very worrying and alarming.

I have just received this as I was recuperating at my family’s home after my recent operation of mastectomy and full axilla node clearance.

The surgeon says that the operation may not remove all the cancer and goes on to say that the cancer may come back and the cancer may have already metasised or may do in the future.

I feel very distraught anxious and worried after the initial relief of my operation and wondered if anyone had been told anything like this.

Thank you Xx

[chakakhan]

HI again,

On a different note,…does anyone have knowledge of PICO dressings?

I have a PICO dressing after my mastectomy but part of the wound is not within the airlock technology part,…the white bit and it is sticking out both ends under the clear bit… a lot.

I didn’t know if this is right or I need a bigger dressing if there was one and wanted reassurance the dressings are on properly.

Contacted BCN but no clarity and dressing is on for 2 weeks and I have been unable to find out from anyone so far.

BCN were unsure too.

Thank you,

Xxx

[salbert]

Afternoon all

Hello and welcome to @browneyes. I had two lung nodules, a liver lesion and an area of concern on my spine. The PET-CT scan showed no distant disease and so they did a follow-up CT scan of the lung nodules 3 months later. They had not changed and my letter advised these were benign. I have been told that in the same way we grow lumps and bumps on the outside of our bodies as we age, so the same happens on the inside.

I was also told by my consultant, the wonderful Katherine Krupa, that if they were cancerous then the chemo would take care of them. I double-checked this with her as I wanted to be sure this was accurate and I had not misheard and she said yes. From the terror I felt on being told that they had found them to how blasé I felt by the time they did the follow-up scan was remarkable. I put this down to switching to a medical team who filled me with hope. As I have said many a time, the mental side of all this is vitally important and we need to take care of it.

I am not the only one on this forum who had lung nodules because I posted on here back in January about it and had responses from people who had also had them. It’s quite common, I am told. Please let us know how you get on.

@chakakhan Could your letter be just them covering all bases? In that they can’t say for absolute definite that you will be 100% cured so they need to cover their arses, for want of a better expression.

Even when we get told there is No Evidence of Disease, they are careful not to say, ‘We have cured you’, even though our treatment is curative.

Stay positive, stay hopeful, stay strong, my lovely ones. We have so much to be positive about.

Love Salbert
x

[naughty_boob]

@chakakhan I agree with @salbert that they may be covering all bases. There is no guarantee with bc. I remember being told they couldn’t guarantee they got all the cancer out and there maybe a possibility of more surgery on the boobs or axilla. I was told that as I’m HER2+ cancer cells can spread in the blood to distance places even though the lymph nodes were clear, but the chemotherapy would deal with this.

If you think about it, you will probably be given a leaflet from BCN about what happens next which covers recurrence and secondary symptoms to look out for, although , you may not have been given this yet.

Oh dear @salbert, how is it I don’t know your full diagnosis!!! I’ve read so many posts and my brain can’t keep up. I’m glad you were able to tell @browneyes about your experience. I’m hoping some others can also reply about their experiences.

[jeml]

Hey everyone! Not checked in for a while.
Got my 4th chemo on Weds! Its going quick.
Just wondering when everyone lost there lashes and eyebrows? Mine are still going strong ( for now ) when i went for my third round my nurse was surprised i still had them. Jemma

[arty1]

@chakakhan Your photoshoot sounds perfect , that is a lovely way to celebrate your body before surgery , its hitting home now that im about to say goodbye to my breast
Ive considered painting my boobs on Sunday and trying to get some arty shots, Ill see how I feel .
So good to hear that surgery was ok , Im terrified of not waking up !

I cant begin to understand how upsetting that letter was . It sounds like covering bases to me because we know that there is never a guaruntee it wont come back or spread but it doesnt mean that is the case x

[chakakhan]

Thank you Salbert and Naughty boob for your reassurance and positivity and sharing your thoughts and experiences.

It could be covering all bases as you both say.
I read it possibly like a disclaimer as my surgery was delayed.

Though Naughty boob I didn’t know that Hert2+ cancer can spread in the blood to distant places even though the lymph nodes were clear!
Oh and I haven’t been given the leaflet you mention but I’m sure I will at some point.

Salbert you have had a difficult journey and I am so pleased that things have turned around, though your experience I’m sure will be helpful to others.

I did not receive a follow up scan on my spine however and
I’m wondering should I have?

Anyway thanks for the helpful reply’s it is much appreciated!

Love CK Xx

[chakakhan]

Hi Jemi,

My experience was I kept my lashes and brows whilst having Taxol first then I had EC afterwards and they began to fall out after the second or third round I think…it wasn’t until my chemotherapy ended that they all fell out completely.

I tried desperately to keep them with all kinds of expensive serums but on a positive note they grew back so fast within weeks and my eyebrows are now better than ever!

It does sound promising that you still have yours and of course everyone is different, I will keep my fingers crossed that you keep yours!

Best of luck with your chemo Xx

[arty1]

@browneyes - I know im one to talk … but please try not to worry , Im an ex nurse and can tell you that most nodules under a cm are usually harmless and we all quite often will have nodules show up on scans and unless we are having scans for other things wed be none the wiser

@priscilla84 I felt sick when I got my HER diagnosis but I hang onto the fact that herceptin therapy is the wonder drug that will knock this cancer into the park .Right now Im trying to face my biggest fear which is surgery … and then ill find a new fear afterwards

@salbert like you , I was partying at a music festival in June …oblivious to the cancer lurking in my body … surreal isnt it x

[chakakhan]

Hi Arty,

I feel for you having so recently been where you were just a couple of weeks ago, I was so terrified too.

I wish I knew the right words to ease your worries as it is so hard but if there is anything you want to ask please feel free.

I think that painting your boobs and getting some Arty shots sounds like a great idea! How fabulous.

For me I captured them forever and was able to let go.

Surgery was better than OK it was seamless from the anaesthesia to recovery and you will absolutely wake up I can assure you, I worked in theatres for years and everyone woke up!

Thank you for your reassurances regarding the letter it is helpful Xx

[browneyes]

Thank you to all who replied to my question. It is so very kind of you! I do appreciate it very much.

Hearing that many people have them as well does make me feel better. I will hold on to that for a bit.

I have been lurking around this forum for some time but because I am quite shy, I usually keep to myself and don’t interject in conversations. I am jealous of how friendly, positive and supportive you all are to others all whilst going through this nightmare yourself! You are amazing!

I have another CT lung scan coming up as well as an abdominal ultrasound and echocardiogram. I will then see my oncologist at the end of September for my next Herceptin treatment which I believe he will have the results by then.

I will let you know how it goes……until then, I can’t promise that I am not going to teeter-totter between feeling positive and doom and gloom but I will try!

[jeml]

Oh thats annoying! I was talking to someone a few days ago about this, i said they probably drop out once im finished chemo or something.
I not been using anything to keep them.
Asked my partner to give me a face massage weeks ago and he said ’ what if your eyebrows rub off ’ we had to laugh at that bit.x

[isthisreal]

Hi, I’m new to this chat.
I am triple positive. Had 20 weeks of ECT, Phesgo and underwent a lumpectomy a few weeks ago.
I will now move onto Kadcyla for 14 rounds and have radiotherapy during that time, as well as probably Zolodex and probably Zoledronic Acid. I had a difficult time on ECT and am scared of more chemo.
Would love some advice from anyone further down the line.

[salbert]

Hello, gorgeous gals

So, I started work this morning, got a call from my Mum to say my Dad’s leg was red, swollen, hot and that there was a rash shooting up his thigh so it was race round, 999 call, put them in an ambulance and back to my desk for a midday Zoom business meeting! Honestly, another thing this year has been good for is learning how not to flap. I take things way more in my stride now. I’ll finish work, do a Morrison’s shop, teach my Musical Theatre class, go to my son’s GCSE Parents Information Evening and then go to the hospital by which time I would hope I will be able to take my Mum home. I accept this is just the stage of life I am at now. At least we were able to go to our local farm tearooms yesterday and enjoy tea and carrot cake. You have to take life’s small pleasures where you can.

So…

@jeml Well done for hanging onto those eyelashes and eyebrows!! Mine held on until after I’d finished EC and Paclitaxel. I was so smug but my pride came before a fall. I was taking the Mickey out of someone in my February 2024 Chemo Starters group who had just one eyelash left. We were watching the England football match and I told her not to cry if we won, in case it fell out. I then promptly lost all of mine! However, I just used a good eyeliner which looked fine and then they suddenly all grew back in super quick time. Here’s the thing. After having such blonde eyelashes and eyebrows that you couldn’t see them for my whole life, they have grown back dark so now I don’t need make-up for them. Winner!!

@arty1 What a fabulous idea to paint and photograph your boobs! I wrote my Mastectomy Musings poem the night before mine which I posted somewhere further up this thread. It got such a great response that it made me feel really happy so I definitely recommend doing your own tribute. Plus which, this implant looks absolutely fine so the only weird thing is my lack of nipple and seeing as I don’t walk around topless, it’s neither here nor there!

@chakakhan I didn’t get offered a follow-up for my spinal area as they were happy it was wear and tear. If you aren’t sure then ask why they aren’t following it up. You need to put your mind at rest. As for the HER2+ cells getting into the bloodstream, I must admit that this bothered me when I first read it. Since then I have put my mind at rest because I know that chemo sorts that out, as does Herceptin and our odds are really good. I spent hours reading studies and am satisfied that our breast cancer has become a good one to have, if you can call it that. Sure, it wasn’t, but it is now.

@browneyes - That has touched me that you came to say hello after being on the peripherals for a while. I’m so happy about it because I realise not everybody is as gregarious as me and the fact that you have felt able to join in means that we are approachable and friendly and tells me that others who feel the same, may also feel they can join the gang. I don’t want anyone to go through this alone. I have always felt there is safety in numbers and that we can help each other through. Be jealous no more! You are one of the gang and now you can always drop by on a wobbly day or if you have concerns or even something fun to share which brings me nicely on to saying welcome to @isthisreal - Great username. I think we all feel like that when we join this forum. From what I have heard, Kadcyla is not nearly as bad as ECT. I’m sure there must be someone on here who knows. I’m guessing there was some residual cancer in the lumpectomy, was there? I was told this is quite common and just means changing the treatment plan to Kadcyla when this happens. I’m wondering if there is a thread somewhere on the BCN forums about it. @naughty_boob will know. She knows everything, I swear! (Apart from my full diagnosis off by heart, which I am frankly shocked by so I will be emailing her my full medical history straight after this post and setting a test for tomorrow. ) I’m sorry that ECT was so bad for you and I hope we can find you some good Kadcyla info/messages of hope.

Love to you all

Salbert
xx