Hi all, i saw my breast surgeon yesterday and its good news! Chemo has done its stuff and eradicated nearly all of tumour. So after discussion with my surgeon, who i have known for many years and trust completely, we think that a therapeutic mammoplasty is the best course of action, with sentinel node biopsy +/- node clearanve if positive. Also have the option of matching up the other side. I am so relieved not to have to have a mastectomy and have all those decisions to make regarding flaps and implants etc. I suppose i shouldnt get too excited as you never know what they might find when i actually get to surgery and also in the future, but for now i feel a bit more optimistic. I will see the BCN again soon to discuss the op in more detail. Im having a magnetic seed and trace put in a couple of weeks before the op, so the sentinel node can be identified and tested with OSNA, whilst on table during op to see if axillary clearance is necessary. This means a) dont have to go to another hospital for radioactive dye localisation and b) axillary clearance can be carrief out straight away without? the need to wait for biopsy results and return to surgery at a later date. I was disappointed to hear that other people dont always have all these options i have been given. Thanks @healing24 i will certainly watch those videos. Best wishes all.
Penny
Hi @kartoffel
I hope you are having a relaxing weekend. Sorry for the latw reply.
My needle phobia is really bad. Even if I donāt look I feel so tense that nurses have difficulties i dread my phesgo injections even if they use a numbing cream. My body is so on wdge that the injection is painful.
I have never head of acupressure I will definitely look into it.
Yesterday I had a meltdown. My surgery options are so limited and I donāt want a 6-month recovery. The quicker I go back to my normal life the better. I should have more info in the coming days but the anxiety it creates is tough.
20th and last week of chemo tomorrow if all goes well. No bell so will slap a bench like @salbert
Have a peaceful end of Sunday all
Big hugs
Marion
Hi @pennyp
That is great news so happy for you!
I will have a sentinel node biopsy too but wonāt escape the mastectomy. Apparently the biopsy is done before surgery, where I thought it would be done during surgery. No idea when the results will come back.
Take care
Marion
Thanks Marion. @marionse25
I must say i was surprised that the tumour had shrunk so much given that it was a very lsrge tumour to start with. I was prepared for them to say i needed a mastectomy. They can take more tissue with a mammoplasty rather than WLE. I suppose this is the advantage of having largish boobs that this procedure is available to me. I still have questions about the procedure and not sure what happens if they do not get clear margins whether re-excision is available or not with the re-arranged tissue, but i am seeing the trsm again to discuss. I am sorry your hospital does not do the SNB at the same time, perhaps the do not have the OSNA facility, but i would have thought you would get results prior to the mastectomy so they know whether to do axillary clearance at the same time. Good luck.
Penny
Also, @marionse25 , so sorry you had a bad day and that you dont have many options. Big hugs. Im glad you have your last chemo and hope you can slap a bench like @salbert . I shall be doing that too the week after! Just got to keep going one day at a time.
thank you @pennyp
I think my hospital has the necessary facilities so not sure why. In any case Indo hope they remove anything that needs to go during the mastectomy. I wish mammoplasty was an option as I have relatively big breasts but I have 4 tumours including 2 that never showed on mammograms and US due to density. I have been told shrinkage or not I would have a mastectomy. My last MRI 6 weeks ago showed a 3 cm shrinkage overall so letās hope it is much more now despite my reduced dose of paclitaxel.
Good luck with everything
Marion x
Thank you @pennyp a hug is really welcome!
I will send an update on Tuesday probably. I am glad your last chemo is around the corner.
I hope all goes smoothly this week
Hugs
Marion
Hi guys
Thanks for the amazing info @healing24 Really good stuff there. I am really interested in you speaking of stiffness after your 2nd zoledronic acid infusion. I had my first one the Thursday before last and I feel like I have done an intensive workout and it hasnāt subsided. Everything is stiff. I am exercising and stretching but no let up so far. Iām going to ask my oncologist about it next time Iām there.
Taste buds STILL rubbish. Iām so looking forward to being able to taste savoury food again.
@pennyp Great news! So pleased the chemo has worked its magic. I agree that itās sad to learn that not everyone has the same options available to them for surgery and reconstruction.
@marionse25 Iām so sorry to hear that you are suffering and I hope that you get more info really soon. Make sure you do slap that bench when you finish chemo. Itās a lovely milestone.
Salbert
xx
@salbert, I dont know how often youāre having the infusions as I think yhis may also determine yhe dosage.
My first 3 are every 6 weeks then moving to every 6 months.
My 1st infusion I was definitely so stiff and soubled over when I got up to walk for about a minute. I basically had to stay walking all day to avoid stiffness ha
2nd infusion was nothing like the first. I was a lot more active straight after it and the next day but I think itās also just the body getting used to it. In the fb group for zolendronic acid and on this forum, most people who donāt have severe symptoms say that after the first one, they barely noticed anything so fingers crossed your next ones wonāt be like this.
Iāll also add that of course the sauna helped me massively.
Hi @healing24 - Iām having the zoledronic acid infusions once every 6 months for 3 years. Iām actually mighty relieved to hear that this stiffness is common. I didnāt even think to check whether there was a zoledronic acid thread on this forum so will check that out.
As for the sauna, well I have got an outdoor sauna raffle prize to cash in so will get booking!
Many thanks for this great advice.
Salbert
x
Hi Everyone,
Last chemo done yesterday! I went to Cavendish square to slap a bench such a good idea @salbert
Such a long day, I left home at 8am to do a heart ultrasound in Chelsea, then back to Cavendish square to do blood tests, see a senior nurse practitioner and then chemo. My PICC line decided to go on strike just when I said she had worked so well so far! My nurse tried everything and then announced I had to be canulated for my blood tests otherwise it would delay everythingā¦ Long story short my PICC line is now back to work and will be used for my MRI on Thursday when we will say goodbye :-).
I was back home at 7:30pm completely shattered but had to take double zoplicone thanks to the very late steroids :-(.
One step done, now onto the next one!
I hope everything is going smoothly on your side
Marion x
Hi @marionse25
That sounds like long and tiring day. Glad you had your last chemo tho. My husband always complains on the weeks that i have to have bloods and an appointment (3 weekly) and then go tge next day for treatment. Its nearly an hour each way in car. Ive got my last treatment next Tuesday, but ive still got to go back the following week for appointment with consultant and for Phesgo inj. Its a full time job being ill!
Best of luck.
Penny
@marionse25 Congratulations!! 
It feels good to slap a bench, doesnāt it!! Sounds like it was a long and grievous day so it must feel all the sweeter for being over. As for Zopiclone, I love the things and I donāt care who knows it!
@pennyp I am so grateful for being 25 minutes away from my hospital. Iām aware not everyone is so lucky. You are right that it takes up SO much time being ill. I have had an appointment rearranged that was supposed to be this coming Monday and am elated as it means we can get 4 nights way that we werenāt expecting to get. Off down to East Wittering again on Friday.
Andā¦andā¦andā¦today for lunch I had a bean chilli and I COULD TASTE IT!!! It was off the scale amazing. My nose has stopped dripping too and the nose bleeds have completely stopped. There is light at the end of the tunnel.
Hi @salbert. Iām so pleased you had a delicious bean chilli, i shall look forward to something like that. It bodes well that taste and appetote comes back relatively quickly, not to mention the end of dripping noses and bloody snot! Yeay.
Hi @pennyp
It was an exhausting day indeed. I am happy I wonāt have to commute every Monday anymore. It takes me 1 hour 15 min roughly each way, sometimes more as public transport is so unreliable in London. As I am still working full-time I opted to do everything on the same day ie blood tests , consultant and chemo, sometimes scans etc when possible. That meant I only had to take on day off from work and avoid several tripsā¦ I now have to go every 3 weeks for Phesgo, a bit annoying to spend 2h30 in public transport for a 5 minute injectionā¦
Hi @salbert
Fantastic that you can taste food! I am hopeful now. Strangely enough taste has been worse since my last chemo, I have a constant vinegary bitter taste in my mouth and even lemon tastes disgusting.
Otherwise just to let you all know about next steps, I had a totally useless appointment yesterday with cosmetic surgery nurses. Luckily they agreed to meet by video call, so it saved me another long commute. They were supposed to share the results of my blood vessel scan, as my surgeon suspected some damage and my belly not being an option. They told me I would have to wait until I see the surgeon again, and gave me the same info I already have on Diep when I donāt even know if that is an option! I am so furious, All I could say is that if it is not an option and they have to take tissues from my inner thighs no thank you. The rest of the conversation was about how fantastic Royal Marsden are, that they have 1% complication rate with DIEP compared to the 4% national averageā¦ and they showed me pictures of boobs that were tiny and perky. Nothing that would look like my 34E.
Such a waste of time really. My apologies for moaning. Iād like to know where I stand but have to face delays again. Grrrrrr
Hope you all have a good day
Take care
Marion x
@marionse25 how infuriating. It is very upsetting to have your time wasted and not be given the answers that you are expecting. Itās such a stressful and emotive time for us. I pray that you get the answers you need very soon.
We have come down to East Wittering as I have had an appointment for Monday rearranged so we have an unexpected opportunity for a break. Itās wonderful that the sun has put in an appearance too and that we will get a blissful few days before my mastectomy. Now that I can taste again, I have just eaten a tub of tomato couscous, a peanut butter, marmite and cucumber roll and two iced buns for an afternoon snack. Oh dearā¦ This doesnāt bode well.
Iām now 5 weeks post final chemo and the taste buds have definitely come back which is great. Had some lovely meals at the weekend before heading in for my mastectomy yesterday.
Surgery went well & now Iām just playing the waiting game againā¦ waiting for the husband to come and take me home and then pathology results next week to figure out whatās next. Overall feeling quite positiveā¦ 
Only minor annoyance is that the drain isnāt coming out before I go homeā¦ but luckily I brought a very fashionable bum bag which everyone at the hospital seems impressed with because itās the perfect size to fit the bottle.
And that @kartoffel is absolute genius! Iām going to dig my bumbag out ahead of next week. Better give it a jolly good wash as well. I remember taking it to Australia about 20 years ago.
Hi Everyone,
I hope things are going smoothly and that you are all managing to finally enjoy our Summer weather.
I met with my surgeon yesterday and now have a surgery date: 28th August. I am scared!!!
He went though my MRI results which show total response to chemo, my 4 tumors gone! he then moved onto not good news, as the 3D mammogram shows my milky way of calcifications has not changed and spread across 12cm :-(. As a result he recommended mastectomy. I was a bit confused and actually totally frozen as I was told calcifications would not go with chemo. I have loads in my āgoodā breast too, which supposedly are benign, when he is now saying that they could become cancerous and spread.
Basically not a good day. And because I donāt want a mixture of belly/inner thighs reconstruction, with 6 monthsā recovery, I am going flat on both sides.
I asked questions about neat scars, dog ears etc and got vague answers, always āit depends on the amount of fat on the chestā so no guarantee I wonāt have to go through another surgery.
And I had again unpleasant comments about going flat. I am really upset by the way pressure has been put on me to do reconstruction. Yesterday it was all about I will regret it, it will be difficult to have reconstruction laterā¦ A lot of surgeons do not want to do immediate reconstruction when radiotherapy is scheduled so why has he been insisting on it?
Hi @kartoffel, great that your tastebuds are back. Great idea to use that bumbag for the drain. I hope you came back home ok and everything is going well.
Hi @salbert I hope I will be able to go somewhere nice for a few days. So happy that you hare enjoying a lovely break!
Take care all
Thinking of you
Marion
@marionse25 Firstly a MASSIVE CONGRATULATIONS that your tumours have had a total response to chemo. That is such great news.
I understand that you are shocked and that a double mastectomy is a lot to come to terms with. I actually asked for one but was told that in my case the evidence would suggest there would be no benefit. I donāt see why you canāt stay flat if you want to. Second opinion time?
I hope you get to go somewhere lovely too. We are back now but it was like a proper summer holiday and I feel very lucky that we our break coincided with the days where the weather was good.
Salbert
x