Hi All, thanks for the replies regarding the seroma. I have called the BCN this morning and explained to her how it felt and she thinks is it a seroma but was reluctant to do anythign with it, she says they really like to give it time to reabsorb before draining it as each time they put a needle in they can introduce an infection. It does feel slightly smaller this morning and the drain wound is not weeping anymore so we agreed to leave things be until they seem me on Thursday where they will decide whether to drain it or not.. unless it gets really painful in the meantime. She said to keep a cushion or a rolled up pair of socks under my armpit and apply slight pressure to it and to only gently exercise that arm for 2 days, not to go mad! So I will see what happens.
Georgie Gee - I think that was a bit insensitve for somebody to ask you what your new prognosis is! People do come out with the most insensitive things sometimes don't they. Ignore them! I've never heard that rads can be worse than chemo. I think once you've been through chemo nothing can be that bad again. I do understand that its tiring and can cause soreness to the area, but at least you don't lose your hair, taste buds, feel sick, can't sleep..etc etc. I guess everyone reacts differently and you will always find someone who finds it terrible, but on the whole most people have said its tiring but much easier than chemo. Its a personal choice again though, and you have every right to not have it if thats how you feel.
Kip, definitely call tomorrow.... sounds like a seroma, but let your team check it out 😘
Shi, thanks for reminding me to keep in touch; now I've 'finished' all of the chemo they can safely give me, I'm suddenly having a planning meeting for radiotherapy next Monday.
I took a peek at a radiotherapy thread on here and I am quite reluctant to start it all, plus 2nd herceptin this Thursday. After my first herceptin I wasn't well enough to have docetaxol the next day. Had temp, nausea and diarrhoea. I'm so hoping it doesn't happen again. I feel like if I have one more side effect, I will explode!
Even with only 75% docetaxol, I've lost all my eyebrows now.
I was talking to an occupational health person today from work, and she told me that radiotherapy can be 'worse than chemotherapy'...... I haven't heard that anywhere else.
Then also a relative asked me over the weekend what my new 'prognosis' is, now I'm not having any more chemo. I haven't answered, because I found the question a bit insensitive - is that wrong of me? I just felt upset.....
Hi LJ i had and still do have sometimes the leg aches. Thats exactly how i felt like id walked miles and miles! In fact my calves ache quite a bit today too, ita SE of T i think! Fancy being post menopausal without knowing! Wow!! Let us know how the pills go.
I thijk j may have a seroma.. hard lump under arm whixh dowsnt really hurt as such more uncomfortable to put my arm down as it feels like an orange there. Any ideas?
Well, apparently I'm post menopausal!!!! I'm not sure when that happened, I must have missed it! Does kind of make the pregnancy test I had to have as part of my rads planning meeting redundant though! I think the oncologist was as surprised as me cos she's made a note on my file to say if I show any hint of starting a menstrual cycle I'm to get in touch at once! So I shall be starting on Anastrzole as soon as I get the prescription. Was expecting it to be waiting in the unit when I went for Herceptin jab yesterday but it wasn't. Shall phone the BCN line tomorrow. Most common SE seems to be joint pain, so what with that and the Herceptin I'm doomed!
Anyone experiencing sore leg muscles post their last T? Mine are like I've just done exercise for the first time in ages!
My fingernails look a bit yellow partway up and then have white ridges on the other half - presume that's the effect of two different drugs showing. Look to have healthy nail showing at the base so I'll just keep clipping them short and watch them improve!
Have a hair appointment on Thursday and I'm hoping to have some unsuitablly coloured streaks put through the fringe area where the hair is strongest - can't stand this unbroken grey much longer!
On the subject of hair - is anyone taking Biotene to help with regrowth?
Morning all, just had a good read through all your posts.
CDC - good news for your brother... what a relief, now just fingers crossed for clear margins for your cousin.
Reddi - I didn't realise your chemo hotline wasn't manned at the weekend, ours is 24hour. But definately speak to your GP and he can prescribe fluconozole or something else. Get on top fo the mouth before it gets on top of you... its was the worst SE I had I think.
KTK - my nails look horrible without nail varnish. they haven't fallen off but look discoloured and have large ridges on them, they are quite brittle too, so have cut them short and kept a pale pink nail varnish on just to make them look better. My toenails seem to be pretty much ok though. Actually my Tingle thumb is feeling a lot better now, probably 90% back to normal, still numb right at the end but much improved, so hopefully your toes will do the same CDC!
Linda - interesting how they could tell how much the chemo had worked. Thats amazing.
I get my results from the ANC on Thursday and starting to panic...I hate being back at the hospital but I need to know what happens next.. hopefully the RADs soon and the hormones.. I will be asking how they know which to give me. I am like you CDC, I was pre-menopause before this started but have only had 1 period since May so who knows whats happenign now. I am, however, having hot flushes still? Another question for the ONC on Thursday. I'll let you know what they say!
As for my wound.. its leaking a little bit, but I keep a dressing on it and it still feels so numb and swollen.. although it isn't too swollen. I think it feels like your face when you have had a tooth out and it feels like you face is 10 times bigger! I am trying to get the arm movement back, having some success but it is stiff and painful in places... when I put my arm down I feel like I have a ball under there, but there isn't. Definately found the masectomy so much easier than this op. Must remember its only 2 weeks ago and its early days, very impatient to feel back to normal in the arm department again.
Have a good day all,
Hope I’ll be allowed to keep PICC line in for surgery Linda
Great that you got clear margins and the wounds are ok now. Also that the surgeon thinks you had a good response to chemo. Hope you get good news with regards to HER2. Status.
How often will you need to go back to Sutton or will you have follow ups locally?
@cdc Thanks for the suggestion of daktarin. Just took a look, and the patient information advises consulting with a doctor before taking it if you are on docetaxel. So I think I need to wait.
It's interesting that your surgeons are okay with donor-tissue being subject to RT. My team is pushing me away from any immediate reconstruction if RT might be needed after the therapeutic surgery, and not just because of the issue of having to wait for RT until the wounds have healed. I am interested in the possibility of an LD miniflap after partial mastectomy the right breast -- a surgery that often is done after the pathology report is in, but before RT, so not exactly "immediate," but not delayed to a year after RT, which is the usual delayed reconstruction option. And from what I've read, because the LD is a pedicled flap, it is more robust for RT. But I'm guessing I'm going to get pushback on this when I raise it. I guess it's time for me to pursue a second opinion, and definitely to get a chance to talk to a plastic surgeon. (By chance, the assigned surgeon to me at the time of my referral to the breast clinic is not an oncoplastic surgeon; he is head of the department and of specialty surgeries, however.)
I used daktarin oral gel which I just got from my local pharmacy Robin. Might be worth a try whilst waiting for hotline to open.
i’ve made up my mind to proceed with a transfer to the Marsden, I’d made the decision before I had the strange consultation but I’m hoping once I’m actually in their system my experience will improve. I’ve heard nothing but praise from everyone I know who has had surgery there. Not looking forward to telling my BCN and original surgeon but I think I just need to get on with the switch ASAP. Obviously intend to complete my chemo where I am then crack on with surgery. I’ve been told all being well I can have surgery 4 months after I finish last chemo cycle. Kip/Robin with regards to radiotherapy and delayed reconstruction my team ar Barts were going to wait and see if they still felt I needed it after getting my final pathology report. I’ve been told they wouldn’t rule it out due to the size of my tumour on the right. Having radio is less of a problem after a DIEP using my own tissue. Radio and implants would be a different matter, it will be very interesting to see what the Marsden say.
ktk so pleased you got to go away with your OH. I’ve really benefited from a couple of days down at my Mum’s. I think we just need a break from hospital appointments and treatments!
@Kip Thanks for this. Sadly, it was wishful but bad memory on my part, thinking that the chemo hotline is staffed on the weekend. Asking the hospital to page the on-call oncologist feels like overkill for my current symptoms, as I have no fever. I'm now inclined to wait til 9am tomorrow (or til today's symptoms escalate). Bummers.
Hi Reddi, oh dear in my opinion and from experience i would call hotline today and then they can hopefully prescribe something for you. Its best to get on top of it quickly, i left mine a day and it wss horrendous and thats the week i ended up in hospital. I was given fluconozole to take one a day and also nistatiin for my tongue. I got this every chemo cycke afterwards to prevent it happening again.
@cdc I'll be interested to hear your and your surgeons' thoughts on immediate versus delayed reconstruction vis-a-vis potential radiotherapy. In any case, it sounds as though you're finally getting the information, guidance, and care you've been wanting and needing. Hope you manage to get some more rest today after the whirligig of appointments the past few days.
Ladies, in general: It seems that midway through cycle 6, I may be developing my first flirtation with oral thrush. Slight white film at back of throat, plus a fuzzy feeling there that is uncomfortable. I've used a long swab to check that it wipes off, and it does, so it seems almost certainly to be thrush and not leukoplakia. The tongue itself currently looks clear, but the tip of my tongue is sore, and eating anything with texture is massively uncomfortable (good-bye bread). I think this is Friday's legacy: I had a long conference call for work and didn't get a chance to brush my teeth after lunch, as I routinely do.
Question: Does this warrant a chemo hotline call? Or do I just go to the pharmacy to get something to treat it today, or wait til tomorrow to contact my chemo unit during normal hours? In other words, how quickly is this sucker going to envelop my mouth? Worth noting I'm in my WBC trough (day 10).
Gosh Cdc sounds like you got a lot of answers and are making good decisions. I woukd want to get all the surgery done now rather thsn hsve to face it at a later date. If you need extra tummy fat therea plenty goimg spare here!
Sorry for short reply OH just brought me brekkie in bed
So much to catch up on.
Georgie Gee glad you’re feeling more reassured abou the rads. I think the oncologists made a good Call with regards to ending chemo- the infections sounded horrendous and so dangerous. Inreally don’t think you got off lightly at all! All those hospital admissions! Hopefully the rest of your treatment goes more smoothly.
Great you are home now. Take Care xx
Yes I've been given some very large dressings to use if it leaks.
KTK - I am hoping to start Rads fairly soon, they were hoping to get them done before Christmas. I guess that depends on how many I have (they have mentioned 3 weeks) and how long they take to get sorted. I presume there are some kind of guidelines as to how long you should wait between chemo and rads? Until I see ONC next week for results I won't know anything much. Lots of questionsn at the ready.
@Kip @ktk @LJ @Linda @Georgie Gee Hurrah to you all!
@Kip, for being relieved of your tiresome companion; @ktk, for a suite night away; @LJ, for start of rads (love the thoroughness of the NHS with these pregnancy tests!); @Linda, for 9 out of 10 cells eradicated; and @Georgie Gee, for pizza birthdays and the safe and sensible decision -- which sounded like what you wanted anyway -- to save yourself from another bout of sepsis, which is just far too risky.
Also, thank you, @Sally, for very good advice on sundry matters, including words of assurance about normal service in the bedroom department. post-chemo.
Sounds like you had a lovely break KTK. I am finally free of the drain. The surgeon decided that it was 9 days post op and needed to go even though it was still draining. It came out easily but the nurse is concerned it will leak a bit, so have an XXL plaster on it at the moment and have to watch out for swelling. I han an awful bag to carry mine in this time, the strap was made from curtain heading tape ( the bit you put your curtain hooks in!!)...dreadful. Now back home with a nicely healing wound, just need to keep fingers crossed for the results next Thursday then hopefully moving on to Rads.
Have a good Friday night everyone...
Linda - sorry just seen your query about PICC line removal. Mine was removed by the same people who'd been doing the dressing and flushes. I believe they are all sized (like small, medium etc) and each size is the same length, there's just a variance about how much is inside and how much outside. Anyway, because the girls knew how much my outside length was so they could tell for certain whether it was out or not. Just as an aside, mine 'stuck' slightly coming out but lying with my arm down and a warm compress soon shifted it - that's apparently quite common, so no cause for concern if it happens to you.
Great news Linda and LJ, both moving forward onto the next part of the journey. Seems we all are in need of weight help, I blame the chemo brain... I kept forgetting the 10 biscuts I'd already eaten
I have dressing change today and possible removal of drain, although its still way over the 30ml they want, so perhaps I am stuck with it for a while longer. Then results of ANC next week, dreading that one, but I guess as they are out whether they had cancer in or not shouldn't make a difference really? Just want to get moving onto rads and hormones.
Not much slap and tickle going on here either, which made it all the more ironic when I had to have a pregnancy test yesterday as part of my radiotherapy planning meeting!
So RT is all set to start on 26 November. We don't have a unit in Swindon so I'm off to Oxford every day - it's only 35 miles, but because of roads and traffic it takes about 1hr 15mins for 9.30ish appointments. Factor in the time needed to find a parking space and you're looking at leaving about 7.30 if not before. Oh well.
Have the next Herceptin injection on Sunday and should find a prescription waiting for me for whichever hormone therapy I'll be taking. (Had a blood test on Monday to determine menopausal status.) Had hoped to have a bit of a break before starting, but oncologist wants me to start straight away.
Had a long conversation with her about the role of weight loss and exercise as adjuvant treatments for BC. She did say that probably as oncologists they should probably do more to promote it. Anyway, she left me feeling I that was something I could control rather than having it done to me, so I'm trying to get into some sort of walking routine and am getting my head backs into Slimming World. I'd be up for some diet and exercise sharing/support too. Need to shift a stone to get me back to where I was pre chemo and then there's a couple of stone still to go after that!
Have good days ladies, may there be only tears of laughter.
Hi Ladies, thanks for the kind words yesterday regarding weight etc.. would definately welcome some support in the New Year! Bring it on.. for now just trying to rein in the eating...
Georgie Gee - so glad you managed to escape the hospital and got to have pizza with your daughter.. not what you planned but lovely nonetheless. Regarding the stopping of chemo... I think you have to go with your ONC, it makes sense that given all you've been through with the last chemos, it is doing you more harm than good and the rads will blast at the area too. Although we moan about the Oncologists sometimes, they are the experts and ultimatey want what is best. That said, if you don't feel happy with that decision don't be frightened to say so. Take care and rest up, and enjoy the fact that chemo is in the past, get your strength back up for the next part of the journey.
Reddi - I am now baldish, eyelash less and have a leaky drain to add to the sexual goddess look...oh I'm hot to trot now
Good evening everyone,
Im sorry that it has taken me a day to get back to you all and report on my meeting with my oncologist.
I am just getting my head around it all, and have been catching up with rest today at home.
When i I left the ward yesterday morning, I was surprised when the nurses said that they were not 100% sure that I was being discharged, but all seemed ok so I did go home after my onc appointment with my lovely daughter. We ordered pizza as requested, and enjoyed our afternoon.
As soon as we entered the consultation room, my oncologist waited for us to settle, and then said that she had made the decision to stop my chemotherapy altogether. I was shocked, and then actually very relieved, as I was thinking that I would have to negotiate my options going forward. She actually said that she felt that chemotherapy was actually more life threatening to me than the cancer, given my body's reaction. I have had 3 bouts of sepsis after 3 FEC and 1 x 75% T. I do not know whether my views will change further down the line, depending on what could happen in terms of recurrence or secondary ca.
I will still have herceptin for a year, bone protection for 3 years and 3 weeks of radiotherapy.
I had previously been quite worried about radiotherapy, but after the consultant explained more about the accuracy of the treatment, and measures taken to avoid heart damage (I had left sided BC), I am a bit more reassured. With an incomplete chemo course, I am also more of the opinion that I need to have RT. I have no hormone involvement either, so that means there is not anything like tamoxifen that they can throw at the cancer.
I would be be interested to hear what other ladies think about this; to be honest, I feel that I have got away lightly compared to many of you. My surgery has been completed, and I do not have to consider reconstruction or anything.
It is so good to be home now, and I thank you all very much for your support and humour whilst I was in hospital.
Bye for now
Georgie Gee xxx
p.s. Huge guffaw here for "a bald head, no eye lashes and tingley fingers and toes doesn't exactly scream 'love goddess' does it!" Nor does my bedtime program of moisturizing hands and feet and then encasing them in cotton socks and gloves. Nor walls of support pillows. But goddesses we are, nonetheless.
I'm pretty sure my OH will be freaked out by the drains. I'm trying to gradually introduce the concept of them.
@Kip These first days after the time change, as the earth closes up for the winter, are always hard for me. Not quite as hard as the depths of January, but I do find myself going into hibernation -- exercising less and eating more -- and that was when I wasn't going through cancer treatment. My last pre-chemo weigh-in wasn't good news. I know the doctors prefer weight gain to weight loss, and, as you say, in the scheme of things, it shouldn't matter. But I'm annoyed with myself, too. And I just got home from the shops where I picked up fixings for a nice, healthy barley-mushroom-kale stew -- and a salted caramel brownie. All my willpower is busy with other things.
It sounds like your drain is pretty short, but maybe a little shoulder bag might be used to hold it under a cardigan? I wish I could send you one of my cute but usually useless knitting project bags; they might do the trick. Maybe one of your friends has something fit for purpose and can bring with?
Did someone earlier suggest transitioning this thread in the new year to an exercise and diet support forum? Or was that somewhere else? Wherever it was, I suspect I'll be wanting all sorts of support in the new year, as we figure out life post-chemo. It's such a long process, and has such big effects on the body, that it's not surprising that things don't return to "normal" shortly after the end of the final cycle. 💞to all.
Oh ladies, seems we are all lacking in the bedroom department. Not suprising really, a bald head, no eye lashes and tingley fingers and toes doesn't exactly scream "love goddess" does it! Actually I am feeling particullarly unattractive at the moment, hate how I look, mainly due to the weight gain. I'm off out tonight with some friends and have been trying to find something to wear in my wardrobe which (a) I can fit in to and actually do up and (b) covers up the drain! Having virtually failed on all fronts I braved the scales and really depressed myself with my 2 stone weight gain... can't even do up any of my winter coats. I know in the scheme of things this shouldn't matter but I am so annoyed with myself for letting it get this way, although I know I haven't exactly been in the dieting exercising frame of mind lately. In all honesty I keep saying I will address it when treatment is done and I can exercise properly again but I feel so fed up with not feeling like me.... grrr Note to self.. must step away from the biscuit tin.... Rant over... only self to blame... fruit bowl you and I must become friends again!
Reddi - sounds like you had a productive meeting... lots to mull over and fully understand why OH opted out.. my hubby is very much "English stiff upper lip" and would have died of embarrassment.
@Michelle21 Having loads?! Incredible, literally. But I guess we're all different.
Fun thing: my OH and I decided that he wouldn't come with me to meet with the surgeon yesterday primarily because I wanted to be straightforward with the surgeon about trying to retain one nipple for sexual/intimacy reasons. We agreed that my OH -- and possibly also my (male) surgeon -- would find that convo a tad awkward. I sensed my OH blanching, just considering it, even though he's perfectly fine chatting with me about the question. As an expat, I can't decide if it's being a boy or being British. Probably a combination.
@Kip The cryo stuff seemed to work really well in the first T cycle -- when I got Herceptin and Perjeta the day before, so docetaxel was given straight away when I got into the CDU. These past 2 cycles they haven't seemed to do much -- sitting in a chiller bag, even with an ice pack, for 8 hours before they are used means that aren't nearly so cold. (The first cycle the socks were so cold, they were barely bearable. Not so, the last 2 times.) The tingling is across all of my fingers and occasionally in the palm of my hands. I guess I underestimated this SE. Grrr. I hope your Tingle stays quiet after your armpits start to come back to normal.
@cdc Good work on becoming a Breast Density Matters ambassador! 🥂I know this is an issue about which you are passionate, and your story is compelling -- exactly what is needed to get some change in screening policy.
@Georgie Gee Are you home??? I do hope so.
I haven't had surgery yet, but physical intimacy has been awol since my first biopsies, in large part because I was so sensitive in the breasts that it's strange to try to be intimate without touching them -- and my OH and I just think of the cancer then, so we avoid it. 😕(Def TMI, but can't find less specific words for this that aren't super confusing.) Plus, chemo isn't exactly sexy. But as I was thinking about surgery options -- and I will have options -- I realized I need to weigh long-haul considerations like this to help ensure I'm happy and recovering post-treatment in something like the way I'm imagining in my little future projections. Which reminds me that I need to book in with the therapist! (Once a New Yorker, always a New Yorker.)
Surgeon meeting report! 🔪
Meeting with the surgeon was very helpful, though I could tell *he* didn't understand why I wanted to meet with him now since he thought it was obvious that we'd wait til the post-chemo MRI to make the decision. Well, yes, but my case is complicated and I'm going to need more than a day or two to explore pros/cons and wrap my head around how the surgeries will interact with continuing treatment and reconstruction.
Surgeon's current plan is comforting, actually: the oncologist was wrong, and he is planning to spare the left nipple, even though the lesion is somewhat close to the areola. If the path report doesn't have clear margins, then the nipple will need to be removed in a re-excision. For the right breast, he estimates that about 1/3rd of the tissue is DCIS, with some probably much smaller area of IDC, though they cannot tell from any scans which is which. Without yet seeing the post-chemo MRI, he would suggest a
mammoplasty partial mastectomy, possibly/probably taking the right nipple, even though there is no cancer visible in the MRI, since multiple ducts are involved. If he doesn't get clear margins, then we'd go with full mastectomy as the follow-up surgery rather than re-excision, since DCIS doesn't tend to respond to chemo and they would be cutting blindly. There was also an area of LCIS in one of the right breast biopsies, and LCIS has a great risk of recurrence by 20 years -- and in some cases, the secondary cancer is in the other breast. However, I can't imagine that there's much science proving that it's a secondary of the original LCIS, since genetic analysis of individual tumors isn't standard practice yet; probably just some general genetic disposition that isn't a mutation in BRCA1 or BRCA2, so I'm strongly leaning against a prophylactic mastectomy of the left breast.
I'll be spending the next 3-4 weeks weighing the pros and cons of going forward with mastectomy versus having a breast-conserving
mammoplasty partial mastectomy on the right breast. There's just not much tissue to move around at the time of the initial surgery, so I might decide mastectomy, as my remaining tissue probably won't be breast-shaped after the procedure; indeed, I thought that over 20-25% of tissue, the general rule was to do a mastectomy on smaller-breasted women. [Edited to correct info: definitely not a mammoplasty option for me. At 20-40% of tissue removed, it's technically a partial mastectomy. It seems that if the path report is clear, the breast might be reconstructed with a pedicled LD "miniflap" before RT; otherwise it's a free miniflap year after RT -- but with less tissue harvested from the donor site. I guess I need to start a surgery thread.]
I think I'll also see if anyone in the Someone Like Me program matches up with my current cup size (36B/34C) and had a similar decision -- particularly someone who took the mammoplasty option. (I don't think anyone in June chemo starters did, but let me know if I'm wrong!)
CDC - sorry I wanted to add that I think intimacy is last on a lot of our lists... my husband is still not keen to see my scars, especially now I have a drain in tow! I think thats something we need to work on once treatment is over and I can start to feel like a woman again.. still look in the mirror and don't recognise myself (facially or bodily)... In fact hubby has been sleeping down stairs since this last operation as he is scared he will pull out the drain by accident... I think on the whole he is very squeemish...and must say double bed to myself is rather nice but a big lonely.
Ooh.. just got the post and I've received my NHS survey to fill in...something to pass the time
That is so interesting CDC and so impressive that you will get to speak out about this issue. I am sure when I had my initial mamograme and then subsequent U/S and biopsy the doctor said that due to my age my breasts were dense and they couldn't see anything on the U/S. Its one of the things I will be asking about as/when I get to a point of discussing future check ups.
Sorry to hear the SEs are plaguing you again, but good it isnt the nausea. Those steroids are devils aren't they and it does start to feel like this journey is never ending. I am so fed up of the drain being in, still no sign of it leaving any time soon and its makign me feel like a patient too. Im at the hospital tomorrow for the dressing check so hoping that can advise on whether this is normal to be draining so much still. Just another thing to worry about.
Reddi - Sounds like you had a nightare day waiting around and then the needle thing.. grrrr. I had 2 lots of chemo using the vein under the thumb.. painful!!! And I got a big bruise there too. Is the ice on your hands helping with the neuropathy? My tingle thumb is still a bit tingly but I think it is coming back to life slowly, I still get pins n needles going through my hand occasionaly though. But now I have a numb armpit and arm to deal with so focusing on that sensation now.
KTK - good that the rads are going well, what are you using to moisturise?
@ktk I wish I might be a candidate for therapeutic mammoplasty, but I don't think I am -- too small, I think. I'd take less sensation over no sensation if that were an option. A question to add to my list for the surgeon this afternoon. Thank you!