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Cancer support thread 90 - still the best threads no one wants to be on

1000 replies

LemonDrizzle10 · 14/09/2023 08:07

Last one filled up quickly!

OP posts:
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42
TopOfTheCliff · 26/10/2023 10:07

@doublec the radioactive dye is injected close to the tumour to see which lymph nodes are the closest in the lymph drainage chain to the tumour. These are then removed to see if there is any cancer there. They cannot tell just from the dye alone. Sorry, I’m nitpicking!

TopOfTheCliff · 26/10/2023 10:11

@nappybrained sorry to hear what a tough time you are having. It is very hard to lose weight during chemotherapy due to the steroids. It also affects your energy levels. It may be best to leave it till it after you have finished treatment and are looking to build a new post cancer lifestyle. Having said that some people do lose weight if they aren’t eating due to nausea. I was the opposite! Sending strength xx
Top

doublec · 26/10/2023 10:15

TopOfTheCliff · 26/10/2023 10:07

@doublec the radioactive dye is injected close to the tumour to see which lymph nodes are the closest in the lymph drainage chain to the tumour. These are then removed to see if there is any cancer there. They cannot tell just from the dye alone. Sorry, I’m nitpicking!

I think we're at cross purposes... Also, my comment was for @Octopus45 who I think hasn't been fully bought up to speed about this part of the equation.

What am stressing is they don't just remove lymph nodes willy nilly, they need to work out which is the sentinel one, and can only do this with dye and see which one the dye moves into first, and if the dye move into other nodes too.

I was injected behind the nipple too, as are most.

I wasn't told about this part of the procedure or the detour via nuclear medicine until the pre-surgery assessment.

Like I said, I think you have misunderstood not only my post, but who it was aimed for, but the latter is my fault.

Anyway, we're all good!

Silkiebunny · 26/10/2023 11:31

@nappybrained Sorry chemo is so hard going. I would just try to get through it and have whatever operation is best for cancer etc and do weight loss and exercise after. Its strongly recommended not to lose weight during treatment as it can affect recovery and the important thing now is to kill the cancer. Exercise I did minimal during chemo, just some in the bed exercises which tbh not sure they do anything. If you feel up to it great but really be kind to yourself, your body is going through so much. I did swim in-between surgery and chemo and from a week after radio, you are supposed to wait more. But you build up after that. I did find eating little and often rather than big meals helped not add weight during chemo but main thing is to get through it.

I had nipple removed as they suspected cancerous though wasn't in end but I preferred they were cautious there.

Re radio make sure you drink plenty 2 to 3 litres I think and moisturizer, I used a burns cream from France but they can prescribe one. I never had any soreness. I think they should prescribe it to everyone but they wait for an issue. Aveeno or similar is better than nothing. I was advised to start everyday weeks before. I also read on lymphedema site they recommend moisturising. I do tend to do that as swimming dries skin.

Glad you have a plan Octopus.

nappybrained · 26/10/2023 11:48

Thank you all..just doing a bit of overthinking all.
Off to get that protein in ( egg on toast,) before heading off for the good poison infusion!
Sending you all best day you can have x

RedRosesPinkLilies · 26/10/2023 11:49

@TopOfTheCliff is it hard to lose weight - even with a three weekly chemo cycle (Carboplatin and Paclitaxel), and steroids just at chemo times?

I’m just asking because my weight is creeping up, and I’m not happy about it - but realise it’s not the thing to worry about just now. So if I have a reason, maybe I can excuse myself. I am exercising when I can, and eating mostly healthily…

Last chemo is next Wednesday- I’m already on the Great Recovery thread, maybe I need to be patient and more forgiving of myself.

Octopus45 · 26/10/2023 12:34

@doublec thanks for the info re the nuclear dye.

@craggyrat sorry to hear that you needed more time off and that radiotherapy is hard going. Please go easy on yourself.

@nappybrained sorry to hear that chemo is hard going. Be kind to yourself. Love your user name btw.

Hope everyone is having an ok day.

tam23 · 26/10/2023 14:33

@Octopus45 My surgeon didn’t use the blue dye, he just used the radioactive tracer. I had to go to a different hospital in the morning before the operation for an injection near the nipple and he used it to locate the two nearest nodes to the tumour and removed them for testing. He said he would only use the dye if he couldn’t locate them using the tracer.

TopOfTheCliff · 26/10/2023 16:34

@Octopus45 my right breast lumpectomy was done through the nipple area. They made a circular cut and lifted the whole thing up like a manhole cover, removed the tissue below and glued it back on. It was a bit purple for a while but is now quite normal. The other side was further out so I have an incision scar there. Good luck in November.

@RedRosesPinkLilies I found it impossible to lose weight during chemotherapy. I was comfort eating as I was so miserable and if I cut calories the fatigue was immense. But I am a greedy person and never miss a meal. Once I finished treatment for cancer no 1 I shed all the weight and got fit again. Now I have to do it a second time I shall be a bit gentler on myself. There is no rush. I shall do some swimming too as Aquacise is good fun.

RedRosesPinkLilies · 26/10/2023 17:44

@TopOfTheCliff - good to know - very sensible outlook. Crazy of me to be thinking about this at all - but it’s annoying to have clothes that don’t fit.
I am looking forward to gradually returning towards normal when I can get back to the gym and just have fun doing different classes. I’ve never had that free time before because there’s always been a teenager to ferry about.
Looking forward to just looking after me.

tothelefttotheleft · 26/10/2023 20:47

@Silkiebunny

How does losing weight affect recovery?

tothelefttotheleft · 26/10/2023 20:52

This is what they said in the follow up letter. Although in the meeting it was more of a no!

Cancer support thread 90 - still the best threads no one wants to be on
Silkiebunny · 26/10/2023 23:14

Not an expert but something like this Left I saw re surgery and chemo is similar but fine to do it after that.

After surgery, your body requires a higher amount of energy and protein for the healing process. For this reason it is not an ideal time to attempt to lose weight. It is more important to focus on weight maintenance because a lack of proper nutrition can cause dehydration and an inability to heal properly.

doublec · 27/10/2023 05:06

tothelefttotheleft · 26/10/2023 20:52

This is what they said in the follow up letter. Although in the meeting it was more of a no!

Can I just clarify that you have triple negative IDC? Without seeing the whole letter, particularly the diagnosis which is usually the first line of the letter, and in bold, the paragraph you have supplied is not clear language.

To repeat, it is not for them to dictate to you what procedure you want. Ultimately, your wishes are what is important. If you want a mastectomy, then they should respect this.

Secondly, while your tumour is only 10mm, it might well be bigger once they remove it. Ultrasound initially measured mine as 18mm, and it was actually smidge over 50mm. Your team know there is a very real possibility your tumour could be bigger and in addition and they could end up having to take more tissues. (I recall the first lumpectomy I had at 15, the surgeon with 30 years experience was confident it would be a small scar/easy surgery and take less than an hour. I was in theatre for almost three hours (incidentally, the same time as my mastectomy thirty years later) and the lump was the size of a sausage and due to its positioning, was a far more intricate to remove as he wanted to give the best result and scar possible.

Are you outside London? Not somewhere with a large breast cancer unit? Is your consultant older and male? Sometimes, this demographic are really anti-mastectomies, and not as up to date with all the new advances/surgical techniques. While it is true that most oncoplastic surgeons want to conserve as much of the breast as possible, they should not dismiss what you if you want a mastectomy. What is most shocking to me is the way the letter is written and language used. It is patronising, reductive and not clear. Definitely feed this back to PALS.

If I were you and I wanted a mastectomy, I would keep insisting on this. They cannot operate without your consent, and as it is a grade 3 cancer, they have to do so sooner. Also, what if pathology reports the margins are not clear? They will need to do a second operation a few weeks later. If these margins aren't clear, they will need to do a third. If this is still the case, a mastectomy is them the only option. Obviously, this is worse case scenario, but part of my reasoning for opting for a mastectomy was that it was the least amount of surgery because it removed any option of further surgeries should my margins not be clear.

FYI - it takes around six weeks to recover after a mastectomy/the scar to heal and for the next states of treatment to commence. Recovery for a lumpectomy is about half this time, although the scar can take as long to heal. I think they're trying to scare you into doing what you want. So long as chemotherapy starts within three months of surgery (I think), all is fine.

Personally, I wouldn't be happy with this person being my consultant. I would ask for a referral elsewhere.

Good luck with whatever you decide to do.

--

PS. Right breast removal. Remember, only the risk is reduced, not the chance of getting a tumour in your other breast. I have a a rare double BRCA mutation have been told, not even recommended to have my other breast, ovaries and fallopian tubes removed. I have told them no, absolutely not. There is no value for me to have anything removed unless there is an issue because removal does not remove the risk of cancer completely, and besides, despite my terrible genes, I might not even develop cancer in any of these places anyway. Please take heart from this and try to not worry about anything happening with your remaining breast. The one good thing about having cancer is they will monitor you closely for x amount of years afterwards, and should you have a genetic mutation, you will be eligible for a yearly MRI which will find anything suspicious while it is still early and easily treatable.

Tilllly · 27/10/2023 05:13

Do we need to migrate to a new thread?

AllotmentTime · 27/10/2023 06:00

Crikey, I knew I hadn't posted for a while but didn't realise it was this close to new thread time.

@ClashCityRocker congrats on your good news. Hope the meal out was nice!

@TopOfTheCliff congrats on finishing your Cape marathon! 🥳

Hope everyone is okay, sending strength to all.

OP posts:
LemonDrizzle10 · 27/10/2023 07:40

New thread

OP posts:
LemonDrizzle10 · 27/10/2023 07:42

Congratulations on completing your Cape! That really was a marathon - what an achievement!!

OP posts:
LemonDrizzle10 · 27/10/2023 07:42

That message for @TopOfTheCliff
(I’ve still got chemo brain!!)

OP posts:
ForfarBridie · 27/10/2023 08:08

Well done Top. As lemon drizzle says - what an achievement. And I do hope your feet feel better soon.

I loved your house. It’s what I’d go for if on my travels and staying in an Airbnb. In fact my brother once described something I’d chosen for us to stay in for a week as ‘the kind of house that would make you clasp hands with your wee school pals and run past with your eyes closed on the way home from primary school’

He on the other hand has us staying in very modern apartments or houses when we go away and I was really glad of it in Fife last week when I was freezing to the bone and had to be defrosted on the couch with full blast heating and a big duvet. It was a far cry from the old days when at a family gathering and the children would be put to sleep top to tail in bed and kept warm with overcoats or an aunties Musquash coat. Billy Connelly describes it brilliantly in one of his stories. In fact the first I heard it I thought ‘is he somehow related to us’.

ForfarBridie · 27/10/2023 08:09

I’ll move the above post

SummerCycling · 27/10/2023 15:23

Silkiebunny · 20/10/2023 20:10

As far as I know Summer its generic cancer advice, maybe breast cancer though would imagine applies more widely as well, based on research but it was a while back I saw it and can't remember where. I think its 3 to 5 hours a week of moderate intensity exercise. Just had a quick google and this came up:

https://blog.dana-farber.org/insight/2018/02/can-exercise-reduce-risk-cancer-recurrence/

I find it good for mental health and physical health to do within that range. I keep a record of how much I've done, add the minutes each time and calculate and average.

@Silkiebunny

Thanks for your reply and link! I clicked on the study they were referencing about the 3-5 hours and found the following info which I'm pasting here in case it's helpful to other people too:

Three MET-hours is equivalent to walking at average pace of 2 to 2.9 mph for 1 hour.

The benefit of physical activity was particularly apparent among women with hormone-responsive tumors. The RR of breast cancer death for women with hormone-responsive tumors who engaged in 9 or more MET-hours per week of activity compared with women with hormone-responsive tumors who engaged in less than 9 MET-hours per week was 0.50 (95% CI, 0.34-0.74). Compared with women who engaged in less than 3 MET-hours per week of activity, the absolute unadjusted mortality risk reduction was 6% at 10 years for women who engaged in 9 or more MET-hours per week.

Conclusions: Physical activity after a breast cancer diagnosis may reduce the risk of death from this disease. The greatest benefit occurred in women who performed the equivalent of walking 3 to 5 hours per week at an average pace, with little evidence of a correlation between increased benefit and greater energy expenditure. Women with breast cancer who follow US physical activity recommendations may improve their survival.
__

I'm not hormone-responsive (well, at least not ER or PR, who knows about AR etc) but I think it's very helpful to have this guideline. Thank you @Silkiebunny In any case, I can't picture them having had enough or possibly any Her2+++ Er-0 Pr-0 patients back then who survived, so they might also have had similar benefit. The study was done with women diagnosed 1984-98, so I think that's pre the Her2 MABs etc.

It's very encouraging too that it doesn't have to be high impact sport, normal walking is good!!

SummerCycling · 27/10/2023 15:30

@tothelefttotheleft

What struck me about the letter was they way it refers to Her2 as "Herceptin receptor". Herceptin is the brand name for the monoclonal antibody trastuzumab; it isn't a receptor but a targeted immune therapy for Her2+++ disease.

The doctors generally seem to use the term Her2 or sometimes Erbb2 or neu. I've literally never seen or heard of anyone calling the cancer as being Herceptin receptor negative.

HohiyiKozbevi · 30/10/2023 15:31

Thanks for your thoughts @Octopus45 and others. I've just been lurking/in denial for most of the last couple of weeks but "shit just got real" now as I had my PICC line installed today and the chemo kicks off at 9am tomorrow. Seen so many dire warnings about the effect of chemo on the ability to taste, enjoy and digest food that it almost feels like tonight's supper is some kind of "Last Meal Of The Condemned" - we are having curry.

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