Cancer Support Thread 84 - gently crunching our way into autumn

[mowly77]

New thread as old one about to be full. As those who have been around far longer than me have said: Welcome. Pull up a chair, help yourself to a biscuit, a large gin, or a detox tea. Or all three. This is a supportive thread for anyone with cancer to discuss how things are going, ask for advice etc., vent, scream, or discuss life in general.

Please feel free to join for support if you are going through tests as well, hopefully they will come back all clear, but if not we are here to hold your hand through the journey.

@TTopOfTheCliff thanks for asking, I'm doing ok thank you, actually slept last night, think the steroids have kept me awake, so last night was very welcome. I've been drinking alot. Apart from the tiredness from not sleeping I don't think it's kicked in yet, I know it will, but nice while it's not, if that makes sense. I went to work yesterday morning and am again this morning, much to my mum's horror, who, of course, only wants me to stay in and stay resting and safe, wich I will do when the time comes for that as I'll have no choice in the matter, I have parred down my work schedule this week.

Thinking of everyone, whatever you're all going through this week. X

Do you have an update on your meds @thereisonlyoneofme? Really hope you've had some progress there.

I am with you on the working @Chocolateismyfavourite. I'm keen to work as much as I can, but I have bad back ache from sitting at my desk which I never used to suffer from before surgery - I guess I am holding myself differently, so must take more breaks. I have a new date for my results appointment through - next week, so keeping everything crossed it doesn't get postponed again.

Things have turned round nicely here thank goodness. We have got FIL into respite care just in time for DH to go off with his cycling gang for the weekend. MIL is home from hospital and tucked up safely with SIL staying so I am free as a bird. I’m feeling fine, I just have a sore mouth and guts. I’ve even done two gym sessions this week. The difference between FEC and EC is huge.
Nobody should accept FEC now it’s outdated and brutal!
Now how shall I celebrate my freedom? I hardly know what to do with myself.

love to all going through the mill
Top x

@dottydotty2 fingers crossed for you it doesn't get postponed again. Yes make sure you take enough breaks, I'm a self employed cleaner, all my customers are being great about changing or stopping days, but if I don't work I don't get paid so I'm working, carefully, while I can.

@TopTopOfTheCliff glad you have sorted everything out and are as free as a bird. Not good news about fec, I have three rounds of those after the 11 weeks of stuff I'm on now I have left. I have heard fec isn't nice to say the least

@Chocolateismyfavourite FEC is extremely effective at killing cancer cells. It used to be the standard regime. There is evidence now that leaving out the Fluouracil doesn’t reduce it’s effectiveness. My 73 year old oncologist used it for my previous regime but my new young one says it’s no longer recommended. You could ask what your team think. Everybody gets a different plan. I Don’t want to unsettle you!

I am on paclitaxel and carboplatin, but I've been reading research on OC some of which suggests that the addition of paclitaxel may not make a massive amount of difference. Paclitaxel is the more toxic one of the two, but you just seem to get a standard recommendation, I wish that they would present more shades of grey to you to make a decision, as I might have been prepared to forgo the one or 2% benefit the paclitaxel gives me because I am concerned about its effect on another cardiovascular condition which the consultants don't seem to take into account. I appreciate that some people want everything possible thrown at them, and that's fine, but plenty of us don't and I have had conversations with them at a level that indicates that I have read the research and understand the statistics.

I had both the guide wire inserted and the radioactive injection on the day of my surgery - I was really worried about both of these, moreso than the actual operation. Infact they were both fine, all done by 9 am, and with them out of the way, I was almost looking forward to the surgery as the easy bit.

I am now 8 days post surgery, still a little tender, but moving both arms freely (after a lumpectomy) and feeling pretty good.

Sending good wishes to everyone on this thread.

I missed the new thread starting as I was away in Cornwall on a family holiday kindly donated to us by a cancer charity. It was amazing, just at the right time to give me a break from pre-surgery nerves. Anway, here is my "cancer CV": diagnosed with triple positive breast cancer Dec 2000, treatment was FEC-T chemo, mastectomy, radiotherapy, half the course of Kadcyla chemo then reverted to Herceptin as the Kadcyla irritated my liver. Finished Herceptin this summer. Having DIEP reconstruction next week! Tried & gave up on two different hormone blockers but will try another after surgery as should be on them 5-10yrs.

@Chocolateismyfavourite I had FEC last year & it seemed everyone else was on EC as the F was no longer deemed necessary, but my oncologist is pretty old-school. I did not have an easy time on it, but then I didn't expect to! If you have a lot of problems, the dose can be reduced. There are many meds for side effects too.

I’ve just been told that the cancer they removed from my breast was a grade 2 not 1 as they had originally told me from the biopsy, and that the sentinel nodes weren’t clear like they thought they would be from the images. Of the three they took, one was clear, one had cancer and one had a “tiny cancer deposit”. So now I have to have more out. I’ve gone from tentatively thinking it’s shit but I’ll be okay to being utterly convinced it’s spread and that I won’t see my baby grow up. Now I’m getting “we don’t expect this to have spread” but they “didn’t expect” it to be in my lymph nodes and it bloody was so what’s the point in any of it I can’t bear it

Oh @WorryMcGee I am sorry. The fear is so awful isn’t it. I was told 2 lymph nodes looked “hard” but not suspicious and it turned out 8 out of 10 had cancer in them. That has been the thing that has compounded my fear more than anything else because clearly it WAS spreading! I’m OC though so slightly different as I had full lymph clearance during surgery but no telling if it’s gone further.

Them being wrong totally changes your confidence in them and it is so frightening. Have you had a CT scan yet to check elsewhere? I’m not sure what they do for BC but I had an eyes to thighs CT which showed no signs anywhere else and relieved my current fears slightly at least. Sending you a hug.

I have a CT and bone scan on Monday and axillary node dissection on Thursday. I’m just petrified and convinced now that they don’t know anything so all this “we still expect to cure this” blah blah means nothing to me anymore

@WorryMcGee Same here, three times now I've had changes in diagnosis that have fallen into the "we're very surprised, this only happens in a very small number of cases" category. It does become very difficult to trust anything at all, although obviously there's a lot they can do even with bad news, though not really much consolation at the moment when you don't know what's going on. I had a second opinion, which gave me my last changed diagnosis of a completely separate cancer that my hospital had missed, and response was a breezy,"oh yes, this happens quite often If people will insist on getting a second opinion".

Obviously putting a positive spin on a cancer diagnosis is great for those people for whom the diagnosis doesn't get worse, but I do wonder whether it's counter-productive for those of us for whom they haven't got it right, which does actually seem to be quite a lot of people. Even though they do emphasise that they can't properly stage it until after surgery, when they told you this doesn't look very bad your mind clings onto that and you want to believe it .

@WorryMcGee Try not to worry, initial scans are not very accurate- I had a 5cm grade 2 tumour and cancers in all three lymph nodes they sampled (one was 1.5cm) which didn't show on ultrasound. I had 8 rounds of chemo prior to surgery and full lymph node clearance and the chemo had completely destroyed any evidence of invasive cancer. That was almost 7 years ago and I'm still here and no recurrence.

I just wanted to ask if anyone has any experience of uterine problems with tamoxifen? I've been shown to have thickening of the lining on ultrasound, periods virtually stopped in the past year and had a little spotting occasionally. Yesterday I had a hysteroscopy and they removed a polyp and did biopsy. Dreading being told it's cancerous. Been on tamoxifen over 6 years now,

Oh @WorryMcGee , I feel for you. I am currently waiting for BC surgery pathology results - mine was Grade 3 from the outset and in one lymph node on initial biopsy, so I'm scared of finding out how many more nodes it was in. But it seems positive for you that at least one of the three was clear?

And I don't know if this is some small comfort/reassurance, but it's actually quite common for grading to change after surgery (about 30% of cases, if I've understood the Royal College of Pathology guidance correctly), as the sample in a biopsy is so small. After surgery they assess the whole thing, and different parts of the tumour can have slightly different characteristics. I'm not an expert - just been doing a lot of googling. But the grade is made up of three different factors in terms of how the cells are behaving, each scored 1-3, giving a total score out of 9, and the final grading is based on that score out of 9. But Grade 1 and Grade 2 cancer aren't totally different entities - they just describe points on a sliding scale, so your grade could have nudged up because just one of those factors went up by one point.
But having said all that, the worry is crippling, and you have my complete sympathies - I get where you are coming from.

@WorryMcGee it's time for my lovely DD's pep talk. She is an oncology registrar (and passed two exams this week!)
Being diagnosed with cancer is like being dealt a hand of cards for a card game. At first the doctors can only see a couple of cards. As time goes on more cards are revealed. Going for tests will turn over more cards and this will help the team plan the best treatment for you and play the best hand to beat the cancer.
Knowledge is Power! It's bloody scary though. You are allowed to feel however you feel and we understand here.

My other favourite parable is the Mountain Lion: www.cancerpal.co.uk/post/what-it-s-really-like-to-receive-a-cancer-diagnosis
Read this with a cup of coffee. It cheers me up!
Love to all
Top xx

@purfectpuss I've not been on Tamoxifen but I did have endometrial cancer, the majority of it is oestrogen driven but I understand that (perhaps counter-intuitively) Tamoxifen can raise your chances very slightly. When I was diagnosed I was told that I was "lucky" it was one of the "best" cancers to have! If they've caught it early enough then it is a hysterectomy, which obviously is major surgery, but most women do recover quite quickly especially if it's done laparoscopically, and because the uterus is a muscle it's less likely than other cancers to have spread further, a high proportion of women need no further treatment after the hysterectomy, and there's only something like a 5% chance of it returning if caught early enough, and most are caught early because of the bleeding. I mean this isn't exactly what other people would consider good news, but once you've actually been diagnosed with cancer it is surprising what you will take for good news!

@TopOfTheCliff That's excellent. I LOLed at the kale

@TopOfTheCliff i sent that to my mum and husband last time you shared it, I love it. It’s so totally correct.

Where I live nothing is said about anything found during surgery. All a person told is that your surgery went well and that x y and a were removed and that nothing else can be discussed until the report comes back from the pathologists lab. I can see now that it’s done in case a person is told one thing than it has to change after further investigation. I did however know that I had cancer when I was leaving the hospital as I was sent a text with an appt for the gyne-oncology clinic just as I sat down in my daughters car to go home. Of course my daughter tried to say it’s jut admin but I knew it wasn’t and it was a very long and difficult two weeks till I got my results because of course everyone was down playing it. Plus I was also extremely bonkers at the time also. As it happens I had actually been sent the appt in error, it was supposed to go to my next of kin/my daughter/the point of contact with the Drs but for some reason I got it instead.

@Top - I enjoyed the Lion story. But now I’m wondering if it’s ok to enjoy it. 🙈

@TopOfTheCliff thank you for the story- excellent analogy. Have passed it on to lovely friend at the start of her journey.
im currently trying to believe a 1st clear mammogram after treatment and still checking fir lions…..

I like the lion story. I am scared of the bears though - real and metaphorical. I once encountered a real life bear in a Canadian wood and ran away (which you are emphatically not supposed to do). I guess I need to stick around to find out what these bears have in store for me.

@SierraSapphire Thank you, that's reassuring. Can I ask what sort of symptoms you had? I have only been sent for checks because I had spotting between periods- but it's only ever been the tiniest amount- like a small amount pale pink on the tissue when I have wiped, and very infrequent- about once every couple of months, not getting worse over time. I am hoping the polyp they removed is the culprit!

@purfectpuss yeah polyps would cause that and aren't usually cancerous. I had a lot of pink watery discharge (thought I was peeing!) followed by permanent spotting between periods. The watery discharge seems fairly typical of endometrial cancer, but everything else could be all sorts of things. Fingers crossed for you!