HER2+ and need some buddies

[dilly]

Thank you @arty1, wise words x

[rrey]

Hello everyone! I haven’t posted on here in quite some time. I finished phesgo in August and am rebuilding my life, trying to take positives from what has happened. Such as much better perspective on life, appreciation for small things and focusing on quality time with family. For everyone in the thick of it, keep putting one foot in front of the other. Brighter days are coming, keep your hope and don’t stop moving forwards. I turned 40 this week and celebrated in Disney world in Florida with my husband and children - we had to cancel this holiday last October due to treatment and I feel incredibly grateful to be here now xx

[waveylocks]

Thhankyou @carrie5 I agree with all that yoy wrote. 10yrs on and have been living with the high risk of reoccurence niggle. I was shocked am still clasified as such but no real follow up. I have to request the mammogram every 3yrs as I will be over 70. So very high risk and zero initiated monnitoring from the nhs? Doesnt make sense.

My local breast screening centre was chaotic at best and was reported as so bad as non functioning 3yrs ago plus breast cancer now say its not much better now in this years report!! Not actually inspiring confidence in them.

My plan is: my gp is really keen to refer me elsewhere for my screening. Still waiting on a promised letter from the consultant oncology surgeon I insisted on seeing for my results…nearly 3months on still waiting. GP said he cant refer on until he gets tbe letter. Once the letter comes (if it does…lol) Im going to book a private consult with consultant oncology surgeon I saw to gee things on, for advice. She works at the alternative hospital for screening. And ask her about a) risk level after 10yrs clear b) whether I shpuld be on nhs automatic recall system fot mammograms if indeed I am " very high risk."

Its so sad to see the decline of what was once a very good service. I rang the admin team about my letter. Feel for them as the lady there said they had lots of people off sick with stress or who had left and in all honesty it sounded like they were really struggling to cope at all. I asked if it was possible to see if my letter was in the queue to be done. But apparrantly she couldnt check without listening to all the tapes! I felt for her tbh.

Anyhow been checking the fat necrosis that Ive celebrated with great delight over…and it not any bigger…or smaller. So its my reminder that all can come good even when everything points the other way at first.

And I need to look at this high risk reoccurence thing. I did look at predict 2 for 15yrs and see the survival rate has improved…so maybe the high risk reoccurrence thing has too…they probably dont really know tbh. And after 10yrs of being very high risk but clear its running thin on me. I dont believe it tbh. Proof is in the pudding! Im clear…still am. Beyond that no one really knows! But an annual mammogram would be a helpful check. Maybe Ill just do that privately if the nhs wont! Bottom line nothing in life is a given for ever…and that works both ways. The point is am clear & thats a huge gift! I could be run over by a bus tomorrow…etc…and no one has predicted that!!. Excuse the long ramble!!

[naughty_boob]

Happy Birthday @rrey so pleased you managed to get your trip to Florida. I’m sure you all enjoyed it, so nice to put all your treatment behind you.

Take care.

[salbert]

Well hi, yo, wassup! (She says in her best New York accent). It was a wonderful whirlwind. Got back Thursday, prepped Mum’s 90th birthday party all Friday and held that yesterday. Today I feel ROUGH! I cannot believe how much I have done in the past week. I think I am coming down with something and finally have some time to acknowledge some jet lag but it was absolutely 100% worth it. My favourite day was the one where we caught the ferry out to the Statue of Liberty, followed by Ellis Island, the 9/11 memorial which was so peaceful and beautiful that I found it hard to reconcile with those terrible images of death, dust and destruction. We then went up the new World Trade Center to see the astounding 360 degree views and finally walked across Brooklyn Bridge during the Golden Hour. We walked 44 miles in 4 days but that was the best day. The Radio City Music Hall tour was brilliant, as was the iconic Empire State and the autumn colours in Central Park were beautiful. What a city. It did not disappoint. I start back at the office tomorrow and am dreading it but needs must.

So…@boobitis, I have been in your shoes. It’s like a punch to the gut each time you hear that the margins are not clear. I wish I had been given my mastectomy and reconstruction much sooner so I am glad that your team are not wasting any more time and are getting rid of it once and for all. I wish I could give you a hug as it’s rotten. I thought a mastectomy would be so much worse than the lumpectomies but it really wasn’t. The lymph node removal was worse. Make sure you do some nice things for yourself at the moment. It’s compulsory, in fact. I feel for you, I really do.

@waveylocks you have summed up how I feel precisely. Buy that new car and bugger off on holiday. Do it now! It’s good to hear that you are still in remission after a decade. But keep pushing for that letter as 2-3 months of waiting sounds way too long. And please don’t EVER think you are intruding. There is no such thing on this forum. Everyone is welcome. Especially when you can tell people that you’ve been in remission for 10 years. That’s good news for everyone to hear.

Love your quote @carrie5 and your general attitude and outlook on life actually.

@dilly Yes, I had TSTC (too small to characterise) nodules on my liver and lungs which all turned out to be benign. These were found in the January then I had a follow up CT scan 3 months later and they had not changed. I had 2 positive lymph nodes. @arty1 is right; we have lumps and bumps on the inside too as we age. I was told that at my age (50s), if you look for something, you’ll find it, which is @mrsjelly 's Pandora’s box. It is terrifying, you’re quite right. But as I always say, at least we know exactly what is going on with our bodies which many people don’t. Will you be getting Herceptin or Phesgo?

@rrey - How absolutely lovely to remember your first posts and how awful a time you were having and to see you now with your family in Disneyworld. I remember us both posting about how we would be going to America once all this was behind us and what do you know, we did it at the same time!! More proof that there is light at the end of the tunnel and the sun does shine again. A MASSIVE HAPPY 40TH BIRTHDAY TO YOU!!

And lastly, just hello to my dear @naughty_boob. I don’t think I’ve ever gone this long without communicating with you in almost 2 years! Do you think I’m codependent?!

I am having a duvet afternoon and my bum is starting to ache from sitting on it. I’m not moving however, as my husband has just started cooking the roast dinner so I’m determined to stick it out, although at this rate I’ll have to rub some Ibuleve into my buttocks.

X

[dilly]

@salbert yes, I’m currently on my second cycle of Docetaxel and Phesgo. Glad to hear your TSTCs were benign. Thanks so much for replying x

[carrie5]

@salbert @rrey Delighted you’ve had good trips, thanks for sharing them. We all need something positive on the horizon. I went quad biking today, that was tough, my poor hands didn’t like the steering kick with the many bumps so I probably have the record for slowest run ever through the woodland! Axe throwing, Friday, I was hopeless until we got to the large axe, then I got lots of hits land in the board! Still would rather try something silly than go for things predictably within my comfort zone! Go for it girls whatever your plans whenever you get the moment.

[naughty_boob]

may be we are both codependent?

I’m so pleased you had a wonderful time. And even planned your Mum’s birthday afterwards. You deserve a duvet day.

@carrie5 please you were successful with a large axe, I would have thought the smaller axes were easier. I’m sure you have a unique talent. Sorry to hear quad biking wasn’t as good as you had hoped. But at least you gave it a go.

[woody2]

I had a cyst on my liver on one of my MRI scans. The consultant was adamant it is just a cyst and said they are very common.

[hoggie]

Hello all

After a lovely break from treatment (apart from Herceptin jabs) I am starting radiotherapy tomorrow. I have a week of whole breast rads and a week of targeted boost.

Any tips for me? I have flamingel from the lovely @carrie5 at the ready, but anything else I should know?

TIA

Hoggie xxxx

[dilly]

@woody2, I have a definate cyst on my pancreas which doesnt worry me. The two tiny areas on my liver worry me because they are too small to be clear on the CT scan that they are definitely cysts.

[bigpickle]

Hi @hoggie
Good luck with the radiotherapy. I had 5 sessions then 4 boosters in January. Use the flamigel at least 3 times a day, it is really good stuff. I had slight pinkness then a sun tan. No breakage is sores at all. Drink plenty of water, it does help a lot. Also a tip given to me by a radiographer was to let the air get to the treated side. So each evening I would put a nightie on with large arm holes, put my arm up on the arm of the sofa and let the air do its stuff. I wore crop tops as well.

Hope it goes well for you

[hoggie]

Thanks @bigpickle - just back from the appointment.

Was fine actually. One of the odder evidences of my life as they were playing hits from the musicals on the sound system. A whole new world from Aladdin struck a chord! this year certainly has been!!

Anyway, thanks for the advice. One down, nine to go. xxx

[carrie5]

@hoggie I second that advice from @bigpickle . You sound as if your radiotherapy plan is the same as mine and I stuck with the flammigel and had no problems at all. Best wishes

[kartoffel]

I’ve got one week to my (hopefully) last surgery - reconstruction (DIEP) and I’m feeling a bit melancholy. On one hand, I want it to be over and done but I also don’t want to have to go through the recovery from surgery again. I know I’ll probably regret if I cancel my surgery but at this point, I just cannot be arsed.

Probably doesn’t help that I just found out that a friend of mine had a recurrence. We were diagnosed at the same time and thought she was all clear earlier this year. I’m gutted for her and I don’t know what to say.

[boobitis]

Hi lovely ladies, hope you doing OK today. A week passed since my news about single mastectomy. Initial shock faded and reading through the old posts I know I will get through it. I met reconstruction nurse and I know the plan for my expander to implant reconstruction with the symmetry option open up and even DIEP if I don’t like the outcome. Lots of research but I learnt to adapt when the news come. I still do not get why my surgeon claimed that my IDC was sucked up in the first biopsy after not finding it in my first excision if it was there in ultrasound a night before surgery. Now he took out idc equivalent in size hence I will have mastectomy but loads of dcis and who knows how much extra idc. He thinks now was thr time he finally found the original lump, who knows in this maybe land. It would be a miracle to avoid chemo but I have no expectations any more. The news of mastectomy was hard to take,as hard as the diagnosis but now ladies please tell me that I can carry on living through expanders, exchange operation and all these joys x and how do I navigate it around my 9 years old, we only told him mummy will have the 3rd surgery but how will I handle drain etc around him… I just want to say massive thank you for sweet messages from @salbert @carrie5 @caz591 @arty1 @cass2 and looking at adventures from many of you after this shit show like lovely trips and stuff gives me hope❤️

[carrie5]

@kartoffel really sorry to hear about your friend and it is hard to know what to say. If it was me I guess I’d feel a really awkward mixture of guilt that I was moving forward with the next stage with the surgery and fear that bad news seems to lurk around the corner and when is it going to get me. No wonder you can’t be arsed.
It might be the moment to plod forward and not overthink and remind yourself there are so many different stories on here, many really good. Personally I’d go and do something outlandish in the next few days, but that’s just my way of coping and I’m sure you’ll identify yours. We’ve all done incredibly well to get where we are to date, pulling our muddled feelings along with us. @boobitis, I feel for you too and fingers crossed the next bit goes ok and recovery goes well. @salbert hope re entry to work wasn’t too traumatic, keep reliving you NY memories and get the next plan up and running. Love to all.

[hoggie]

Thanks Carrie. Did you have any pain at all? I seem to have reawakened the nerve pain I had after the original op.

Already grateful for your Flamigel. The radiotherapist was a bit surprised that I had it!! I said I got it from a friend and she said oh well that’s great. That’s what we prescribe for anyone who has any soreness so good you have it already.

It’s who you know xxx

[carrie5]

@hoggie the area where I had surgery and then a seroma got a bit more tender and that’s gradually reduced over time. I’m definitely for using protection before there’s a problem not trying to deal with soreness when it starts. Hope the rest goes well.

[cass2]

I’m so sorry about your friend - I wouldn’t know what to say either and in such tender situations I just don’t think there are perfect words. I’m not sure if her recurrance is local or not, but I hope her treatment plan is put into place quickly. X