@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!
@Kip I'm on TPH (docetaxel plus HER2-targeted drugs Perjeta and Herceptin). SEs could be the combination or just the docetaxel; no idea. With your report, I'm focusing on looking forward to the other side of chemo SEs come December!
I'm at a big teaching hospital in London, so I'm constantly meeting new doctors, too; I've seen so many oncologists, I've lost track. For just usual pre-chemo appointments, I've seen 5 or 6. Then there are an additional 4 or 5 I've seen in A&E or on ward when dealing with infections. I was so happy when I saw the same onco for 2 appointments in a row.
Forgot to note that I had pins and needles through my last cycle, not so much that I was worried (no blistering and very little peeling, unlike @cdc, who has had it bad), but enough that the oncologist considered lowering my dose of T. But because I'm already on 75-80% dose (starting from first cycle of T, due to liver function issues), she decided to hold steady; next time, it might go down to 50%.
(Actually, last week was one assault after another: my BCN got defensive and tetchy about the surgeon appointment request, scolding me for asking the oncologist anything about my treatment plan and basically dismissing my questions in an email; then on Friday my chemo nurse left me waiting in reception for 2.5 hours -- just overlooked my name on the sign-in sheet -- so I had yet another very long day; this also meant that my cryo sock and hand wraps, which are intended to help fight against peripheral neuropathy and nail damage, were no longer ice-cold when it was finally time for T at 4:30pm; the same nurse also completely missed my vein when attempting my cannula, causing a lot of pain and forcing use of the site under my thumb, which clearly wasn't up to it, given the big bruise that emerged. Indeed, when I hadn't got a cannula in by 11:30am and did the maths for when T would start, I broke down crying, knowing that my cryo stuff had been thawing since I left the flat at 8:40am. Had to convince them that I wasn't needle phobic but needle philiac. Only makes sense that SEs this week would be worse this time -- I already felt well and truly beleagured before the drugs even entered my body. I think it does make a difference.)
Hi Reddi, good to hear from you. Seems you have a lot of decisions to make too. Sorry only had straight forward MX, no nipple to save unfortuantely, but well worth discussion if you can save and swap. Sorry to hear the SEs are bugging you, is it T? If so, I found the SEs varied each cycle (with exception of the lardy mouth which was there everytime). But glad to say, 5 weeks post chemo, everything fading, now just dealing with the ANC op SEs instead.
Hear's hoping you get some good answers from your surgeon. I find I see one person for a couple of appoitments and then never see them again. I have an appointment on Friday to have dressing removed/changed and its a lucky dip who I will see. I saw one surgeon to discuss my ANC and then when I went into hopsital found the surgeon I had wasn't her at all... pick n mix at Ipswich I think. At least the ONC has remained the same, although I have only seen her 3 times I think (only twice throughout chemo too).
Hi all. So much happening since my last check-in.
@Georgie Good luck today! I hope you get home, get your belated birthday(s), even if small-scale for now, and sort out things with your oncology team. 🎂Stand strong in pushing your doctors for explanations and answers and for figuring out what the best and better options are for *you*.
@RedRose Congratulations on the wedding bookings! 👰💐You must be so excited. "Enjoy" your last cycle today, too.
@ktk Will be eager to hear your reports from rads. From reading a bit about the side effects, it sounds as though things build up day by day, with some people feeling the effects mostly after they finish the sessions. Have they given you any sense for the dynamics? Do you have 3 weeks of rads? Or did you get prescribed a booster, too?
@Kip What a drag about your drain. It's good to give it the time it demands, however -- and you'll be all the more delighted to see the end of it. I only had 4 nodes out on left and 5 out on right for my SNLB, and I had off-and-on numbness for weeks afterward; occasionally, I still get some. (Need to get back into my routine of doing exercises every day; at the very least, they help loosen up my shoulders.)
@cdc How are your feet and hands holding up??
I'm sure I'm missing people. Will circle round after posting.
On proton therapy: From what I know, it's not that proton therapy -- which sounds like a form of targeted radiotherapy that can be more pinpointed to cancerous tissue -- is unsuitable for all cases of breast cancer; it's just that it's quite expensive and the benefits for many cases of breast cancer don't support its use. Proton therapy seems to be more used in children who are still developing, so radiation damage to healthy cells can have significant effects, and in cases of cancer in the spine, where the risk of radiation exposure to the heart is very high. I looked into it because my left breast tumor is on the interior, so if they proceed with lumpectomy on that side, the breathing exercises to protect my heart and lung will be essential.
Having a pretty crappy cycle 6. I was fine for the first 3 days, but then midway through Monday (day 4), I was clobbered. I'd been to the hospital in the morning for reflexology and a check on my cannula site, which developed a big bruise while I was sleeping on chemo night, and felt tired on the walk home from the bus. By the evening, I had pain across my shoulders/back and through my legs and arms, with stabbing pain in my esophagus now and again, and I was exhausted. Yesterday was slightly better, but still much harder than the same day in cycle 5. Today I woke to what feels like a UTI. As I am off to the hospital this afternoon to meet with my surgeon, I thought I'd go early and drop by the chemo hotline office rather than call.
Meeting with surgeon to discuss state of play. Last week I'd asked my oncologist some questions about my MRI and surgery planning, as I know decisions about mastectomy or lumpectomy will move very quickly after cycle 7. The oncologist couldn't answer based on my case file, so requested a surgeon meeting asap. Afterward I realized that I haven't seen my assigned surgeon (except for speedy SLNB consent and the operation) since before my pre-chemo MRI; my treatment plan meeting was with oncology and was focused on chemotherapy consent. Because the stuff in my right breast isn't palpable or visible on US or mammogram (beyond microcalcification clusters), I've only got a vague sense of what is going on there. At one point my nurse suggested that the plan is for two lumpectomies (left and right), but I don't know if that is accurate, and even if they advise two lumpectomies, I don't know if either nipple can be spared. (I'd really like to spare one nipple, if at all possible -- maybe with a graft from right to left? who knows -- and if I can't, I might just go ahead with a bilateral mastectomy; it's not about look for me, but about physical sensation.) And of course, surgery decisions are interwoven with radiotherapy, too. Would love to know if any of you discussed nipple-sparing options with your teams, and what sort of feedback you got...
KTK - glad first one done. Yes I guess its a very different process being stuck alone in a machine, I like to be around people and chatting so I may feel the same too. I hated being in the MRI machine with nobody to talk to.
RedRose - crikey ball bearings taped to you... wow... wonder what I will get? Fingers crossed for the last chemo... yayayyyy thats a fab feeling, just ride out the SEs and then move on. Good news about the wedding, thats definately something to focus on! Hope you slept well.
The proton therapy sounds interesting, shame its not suitable for BC, but there are always hopes for the future hey. Thanks for the information though.
Im still attached to my drain, hoping tomorrow might be the day we part company. Still stiff, but not too bad, bit sore underneath and the numbness makes me feel weird under the arm but musn't grumble.
GeorgieGee - are you ready to be rescued?
Hi RedRose, so good to hear you sounding upbeat and things progressjng nicely. What is the wire and ball bearings for? Didnt know about that!! And excellent to hear the wedding planning is in full swjng that is wonderful and something exciting to look forward to. I look like a GI Jane so will suit a tank, ill watch for you swinging in too.
Ktk ... Oh i have a while to put up with the numb pit then... Oh well hopefully it will feel better once tth drain comes out?? How did your first Rads go? How many weeks do you have?
Yes Georgie Gee, Shi is right.. you ask all the questions you need... and don't be pushed into anything you don't feel happy with.. its your body... It may be good to have your daughter there to hear all the information and to offer her opinions too.. take it all into consideration and take your time.
Look out for the rope...I'll be swinging in on Wednesday, commando rolling across the floor and whisking you and your daughter out of there.. the tank will be revving! For now, rest up and prepare for Operation Breakout!
I'm still attached to my lovely drain and will be again today, 1 week ago I was on the operating table, time flies when you are having fun I'm working on the exercises, weird being so numb under the armpit though!
Hope everyone else is doing ok, CDC hope the SEs are being kind and the numblies are behaving.
KTK - how are you doing? Coming through the chemo fog now? When do you start Rads?
RedRose - how are you doing? Hows the arms/hands and feet?
Georgie Gee - loving the NaughtyPhils! Good name... I've got the tank revving up, music ready to go and hot pants sparkling..lets break you out.
On a serious note, I think everyone has the right to refuse or question any treatment they are offered. You should definately have a big chat with your ONC, you sound like you have lots of information at the ready, take a list of questions and don't leave until you are satisfied. You have had to deal with a lot of issues and only you know what more you can take. I had 3 FEC and 3 T, but was told the 2nd and 3rd T were reduced due to me being in hospital with NaughtyPhils, they didn't say how much they reduced them by, but did say that it was usual to have 100% of T first time round and then reduce them for the subsequent cycles.
Its interesting to read about the Proton treatment, shame the new machines aren't ready yet though, but worth discussing. Its good to know that treatments are progressing all the time, even it not ready for us just yet.
CDC - glad you got the chemo, not glad you have the tingles and numbles again. Hopefully it will go as the chemo gets throught, my Tingle is definately improving post chemo, its 5 weeks ago since last one and the tip is still numb but a lot less than before, so hopefully you will be the same. Hope those SEs are minimal and you feel brighter soon.
I can't remember if it was on this thread or the May Surgery thread, but there was discussion about finding suitable post op bras? Anyway, I asked a friend of mine who had MX 2 years ago and she buys hers from a catalogue called Nicola Jane (on line website). They aren't always the cheapest but do offer all sorts of styles and fabrics. My friend is large busted and finds that when she bends forward (she is a nurse so has to lean over patients) sometimes she would flash a hint of lopsided cleavage and Nicola Jane do bras which have a built in panel to prevent this, worth looking at. She also buys from M&S and Debenhams but N Jane is her preferred outlet. They also seem to do swimwear, clothing and have a range of bras not only for MX but for reconstruction and radiotherapy. I feel some online shopping coming on and I can't blame the chemo brain now! Eeek.
All the building work going on around UCLH is to accommodate a 'proton therapy machine' - I believe this was the therapy that the couple took their son to Czech Republic for? When there was all the pandemonium about them getting him out of the country against doctor's' wishes? I believe it is meant to be the bees knees in targeted beams . . . . . .but not due to be up and running until 2020 I believe.
ah, and it seems there is another centre in the process of building at the Christie, Manchester.
Shi is totally beautifully bonkers. And just to add to the madness here are a pair of the sparkly pants for you to wear when you are breaking Georgie out
Omg Shi, nearly wet myself laughing! Ive found the drive mode, got my drain in a holster and am ready for Operation Breakout! Listen out for us Georgie we will be coming over the hill, wearing hot pants, tin helmets and blaring out.".I want to Break Free" .... Its an under cover operation obviously.. so don't tell any one!
Do you you suggest I do the Macarena with my drip stand?..... I am attached!!!! 💃🏼😬.
Kip, I really wish I had my own room, but I don't. They are going to see whether I get any better over the weekend, and then review me on Monday morning.
SallyG whatever you meant it made me laugh! Shame about the asda ones not fitting, nightmare finding suitable things isnt it, my bras all rub on mh drain at the moment but thr nurse tlld me tk wear one if i cantohelp the scar flatten again.
georgieGee, sorry you are spending another night in Casa Nhs, hope you can swallow soon, that sounds terrible, jope you are managing to sleep ok, are you in yourown room?
Hello from the hospital
Yes, I'm still here. I am finding swallowing really difficult, even pills and liquids. So am on IV fluids and antibiotics. It seems like there's something stuck in my throat that stops the food or whatever going down.
So the doctors want to keep me here and I can see the sense in it, even though home would be nicer.
Its good to keep up with everyone else on here and see how you're all doing. Thanks for all the good wishes and I hope you will all enjoy your weekend.
Bye for now,
Hi sally, just had a giggle when i read your post, did you mean "Large breast fed ladies" . Or did you mean large breast feeding ladies,. I had visions of large ladies bejng breast fed which tickled me! Have you tried asda on line bras? Ive never really been jnto ljngerie so not usd to beautiful things but these are fine foe every day and j am also small chested, A cup and find thse fine. If j wanted something special j would probably go elsewhere but these are pretty.