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**Tamoxigang Thread 52** With virtual tea, cakes and chat for all with cancer concerns

994 replies

Lilymaid · 20/03/2015 10:25

We were almost at our 1000 post limit for Thread 51 - hope the title is OK but wanted people to know that we aren't just about people on Tamoxifen but for all with cancer concerns!

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Rivercam · 25/05/2015 16:26

I can't offer any advice about your situation, except to say, you are not an idiot! This forum is exactly for asking questions and seeking advice, so you have gone to the right place. It doesn't matter if you have a lump which turns out to be a cyst, or something a lot more serious, this board caters for all.

QueenJulian · 25/05/2015 16:44

Thanks Rivercam , I know that this board is very welcoming. I'm just feeling a bit strange about the whole thing at the moment. In between diagnosis and surgery, despite not knowing whether it had spread and what the future held, I still managed to be quite up, laughed quite a lot (mainly gallows humour admittedly) and felt ok quite a lot of the time. Now I know it's not so bad relatively speaking, I actually feel more down about it and I know that people around me are finding that hard to understand.

amberlight · 25/05/2015 16:54

Hi QueenJulian, yes, it's common, I think, for people to have a down bit after the initial surgery etc. Grr about your BCN though - that's not a lot of help. It may be worth ringing the radiotherapy department and asking to speak to a radiotherapist about their views. I had several lots of radiotherapy planning as they kept failing to line me up correctly - but it still got done in the right timescale (more or less). But do check. And the puckering is probably where the scar tissue from the WLE is settling in. I had the same. The radiotherapy teams are very expert, and I think will know exactly what to do and not do, once you tell them your concerns.

mrsrhodgilbert · 25/05/2015 17:06

Hi queen, you are pretty much where I was a year ago. I wonder if the swelling you are describing might be a seronoma, basically a build up of fluid? You may have some information in your booklets about it, or maybe a very safe google, Breast Cancer Care for example. I didn't experience it myself but others have. I can understand your concern about rads being delayed because of it, they are very careful about the measuring as you will see. Maybe you could call the dept directly and explain the issue, they are the ones doing the treatment and you can't be the first person this has happened to.

I also had a holiday booked last year, which I was keen not to miss. Everyone was fantastic about fitting me in. I finished my rads exactly one week before flying, but it could have been closer. They actually asked me what time of day the flight was, in case they had to take it right to the wire. From my experience the staff know many people will have holidays booked and work around them where possible so don't stress about that too much. Your breast will change again after rads, the density changes, mine has still not settled nearly a year on so whatever you are experiencing now will not be how it feels eventually. I think I heard it takes about two years to stop changing, mine is getting softer now.

If you're going somewhere hot you will need to cover up though, after 4 1/2 weeks of rads your skin is going to be quite delicate. Have you discovered Moogoo, it was all the rage on here last summer when a few of us were going through rads together? It kept my skin intact.

Hello to everyone else, hope you're having good weekends, as much as possible. For those waiting for news, I understand the mental torture, it's quite unique but it does pass.

I'm off to The Haven tomorrow for my first acupuncture session to try to help with the hot flushes and sleep problems. I will report back.

mrsrhodgilbert · 25/05/2015 17:19

Queen, I should also have said, the reactions of others have amazed me over the last year. When you have been diagnosed with cancer the whole world changes and your whole future becomes uncertain. I've really struggled to understand why some people just don't seem to get this and assume that you'll be back to normal in no time. I don't have any answers, just know that you are not alone in feeling how you do. A year on and I still have down days, I still feel hurt when someone I haven't seen for a while doesn't ask how I am. But I've almost come to accept that unless you have experienced this you have absolutely no idea at all what it's like and how to react. That's why I find such comfort here because we all understand.

ljny · 25/05/2015 18:20

Queen, if mrs is right about it being a seroma (fluid build-up) for what it's worth, I was told that rads could harden the fluid.

They said it might or might not disappear later, which I wasn't happy about. Where I was treated, they don't like to drain.

I dodged that fight because the genetic typing results then came back and to everyone's surprice, I needed chemo (original plan was lumpectomy then rads). So it was months before I got to rads, and by then the seroma had mostly dissipated.

HTH. And good luck to you - as everyone's saying, your reaction is quite typical, but most people don't understand - unless they or a close one has been there.

QueenJulian · 25/05/2015 18:28

Thanks amberlight and mrs for your replies. Good advice about calling the radiotherapy department direct, I'll try them tomorrow. I did have a google and I think it probably is a seroma, I'd just like a doctor or nurse to look at it and tell me if it needs to be drained or will just go as I've no idea. And yes, I read about Moogoo on here and I've got some. The rads dept are only recommending Doublebase but I've used that on my face for ages and don't find it particularly moisturising at all. I'm not worried about staying out of the sun but would like to be able to go in the pool/sea with the children and imagine that would be a bad idea if my skin broke.
I'm sorry you feel the same way mrs but like you said, maybe it's hard to understand if you haven't experienced it. I've been very lucky in a way (found it early, it hasn't spread etc) but sometimes I don't feel lucky. I'm also very tired as sleep had eluded me since diagnosis so that doesn't help!

QueenJulian · 25/05/2015 18:42

Hi ljny , that is helpful, thank you, and that's what I'm worried about. My BCN said something about rads hardening the whole breast. She said that something like (sorry, terrible memory) the tissue hardens and will stay like that so whilst age/gravity will affect the other one, the breast that has had radiotherapy will not change. It doesn't sound like that's exactly the case though from what mrs said about her experience of the tissue changing over time. I guess I need to talk to the rads nurses directly.

Sienna17 · 25/05/2015 19:47

Thank you amberlight.

It just seems like everyone I know who has had breast cancer has had a re-occurrence.

All sorts of things keep going through my mind - if I have radiotherapy and it comes back then I've read I can't have a reconstruction if I have a mastectomy?

I'm really worried about what my boob is going to look like after the WLE. As I've mentioned before I'm on my own, I've recently resigned myself to being single but if I ever did meet anyone I'm not sure how I'd feel after having had surgery. I know it's trivial compared to other stuff but it's really weighing on my mind.

Also I've developed a lump, it's right under where the needle went in for the vacuum biopsy thing, so I'm assuming that it's because of that rather than some super fast growing tumour, but it's still worrying me.

Marshy · 25/05/2015 20:54

Hi all and especially Sienna and Queen,
Re the 'lucky' thing, I feel immensely lucky to have caught my problem early, to have had great attention and treatment from skilled and dedicated hcps, and to have had a relatively easy ride re interventions.

But let's not forget that having breast investigations and surgery is a big deal in anybody's book, and let's cut ourselves some slack about that. Going through this at whatever level is bloody tough!

Sienna, your situation is different to mine but reminds me of what I went through so much, with the dcis. It's very hard having to make decisions when you don't have, and can't have, all the information before you have to make those decisions. It's all about weighing up the odds and options and then going for it. Have you talked through all the possible options with someone? Your BCN maybe? If the thought of any chance of recurrence is unthinkable for you would a mastectomy be an option? Maybe not, and perhaps not something you want to consider but just to say that I'm very happy with the outcome of mine with implant recon. Maybe find out what your boob is likely to look like after the WLE and whether there are any reconstruction options? I have to say that ime the surgeons are keen to ensure that you're happy with how you look after, although getting rid of the cancer is obviously their first concern and quite rightly so.

I'm in a long term relationship but I have thought about what it would be like if I had to show my reconstructed boobs to a new romantic interest. I've even wondered if the beauty therapist will run out screaming next time i have a spray tan! Hard for me to imagine the first scenario really but a keeper would be ok with it I think, same as with my stretch marks and untoned bits. It will be ok. No one's boobs are perfect and the most important thing is that you are here and healthy. Fwiw I think I look better in clothes now than did before.

Anyway, I'm rambling now. Thoughts are with you.

Cailindeas35 · 26/05/2015 09:43

Hi all.
I would like to join you. I was given the news yesterday that the lump in my breast is cancer.
I'm booked in for a wide local incision next Wednesday. They still don't know what grade, or what it is exactly til they take it out, so I don't know yet what other treatment I'll be having after. There also going to take a lymph node, just to be sure but they don't think it has spread.
I think I'm still in shock, it doesn't feel like its really happening to me.
I hope ye all are doing well.

Marshy · 26/05/2015 11:15

Sorry to hear that Cailindeas. Good that things are moving along quickly - less time to wait and worry. Stick around and ask any questions you may have.

mrsrhodgilbert · 26/05/2015 11:29

Hi cailindeas, sorry you find yourself here, but it's a great place for information and support and general ranting at the world. I'm exactly one year on from where you are now. We all understand exactly how you're feeling.

I have to run now, I'm off for some acupuncture, but I'll look in later. Fire away with any questions or thoughts you have. It still doesn't feel like this is happening to me after 12 months and I'm feeling a bit nervous about putting myself into a breast cancer centre again this afternoon for this acupuncture.

hotchocforme · 26/05/2015 12:19

Hi Calildeas. So sorry about your diagnosis, but we are friendly here so feel free to chat or moan or ask questions. X

Sienna, I really don't think that it would bother the right partner at all. Relationships are about so so much more than looks. I know that's easy for me to say but I do believe it. Have you got other close family or friends support?

Boobz, I decided against the cold cap as my last 3 rounds of chemo are defo going to make my hair fall out. My husband shaved off all my hair at the weekend, to a number 1. I have got used to it quickly and it doesn't bother me at all, except that I need to wear a hat when out (sun protection.) I do get a little surprise when I look in the mirror though!

Does anyone go to a real life cancer support group? I'd like to try one but no idea how they will be.

Boobz · 26/05/2015 13:56

How do you know it will defo fall out for the last 3 rounds HotChoc? I'm worried now that I am doing this cold capping for naught if you know something I don't!

amberlight · 26/05/2015 15:27

Depends on the chemo, Boobz. My onc told me there was no point in having cold cap, as my 4 FEC and 4 Tax was way too much for cold cap to overcome.
Cailindeas, welcome from me too. Hoping you find the info on here useful. Sounds like a very treatable sort, from the info they are giving you so far. Hoping it will be.

Cailindeas35 · 26/05/2015 15:58

Hi all.
Thks for the welcome. My surgeon was incredibly optimistic. He reckons i got it early and hasnt spread. So im very lucky really. Im so tired today, i think the last few weeks have finally caught up with me.
Hotchocforme my bcn gave me loads of leaflets for local support groups, i think eventually ill go but at the moment i cant face them. I havent told anbody else apart from family.

malteserzz · 26/05/2015 16:18

I cold capped (3 fec and 3 tax ) and even though I still lost most of my hair I held on to some and it did come back very quickly. I used fast shampoo when it started to re grow

Cail sorry you've come to join us, shock is normal I'm still in shock 2 years on ! Ask us anything and we will try and help

I've done had any real life support, just on line. I always recommend look good feel better though they are fab and if you get a chance do go to a session.

Boobz · 26/05/2015 16:28

Sorry you have joined us Cailindeas, but welcome. I am still a bit in shock, 2 months since my first of 2 diagnoses, but it was luckily caught early for me too.

Hmm, so now I am wondering whether I am being silly cold capping. I am having 4 x EC followed by 12 x weekly Taxol (Paclitaxel) and 4 x 3 weekly Carboplatin at the same time. Does that sound like too much for my cold cap? (I am 7 days post EC#2 and so far no loss of hair on my head, but have lost my nether-region hair! - sorry TMI).

malteserzz · 26/05/2015 16:38

Not silly at all Boobz, if you are not finding the cold cap too bad then it's worth persevering with it. Some people hate it and so it's not worth the hassle for them.

mrsrhodgilbert · 26/05/2015 17:57

I'm afraid my acupuncture session didn't work out. It wasn't what I was expecting, the therapist and I didn't get on and I was surprised and upset by her line of questioning before the treatment started. I'm afraid I walked out which is very unlike me. I can't really say much more here other than I went for help with a physical problem not to have a counselling session. I should have known when I saw the box of tissues on the table.

Lilymaid · 26/05/2015 18:07

I had 6 x Tax two years ago and Oncologist told me that a cold cap wouldn't work. Now my hair has grown back, I may now have a course of Erubicilin - for my secondaries - and (same) Onc recommended the cold cap though the nurses weren't too enthusiastic (perhaps because it would make an otherwise short infusion appointment take two hours?). If I have the further chemo I am going to try the cold cap as a bald head twice in two years is too much (despite the fab wig).

OP posts:
Lilymaid · 26/05/2015 18:11

Mrs I would have walked too! I was interested in massage or something similar offered by our local Maggies. When I telephoned for an appointment I was told I had to have a holistic assessment first which put me off the idea. I'm not into going through my feelings with a counsellor I want a massage!

OP posts:
hotchocforme · 26/05/2015 18:20

I was told that the 3 rounds of Tax that I will be having would kill off all my hair.

Sorry about the acupuncture Mrsrhod. What a disappointment. I would not want
counselling in that situation either.

I have put my name down for the LGFB, looking forward to it.

malteserzz · 26/05/2015 18:27

Mrs Rhod how annoying I don't blame you for walking. Hope you're ok and not too upset

Hotchoc I'm sure you'll enjoy it and you get lots of freebies :)

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