Cancer Support Thread 95 - No googling allowed 😊

[LemonDrizzle10]

New thread - we need to stick together!

I'm just checking in and appreciating everyone's candid experiences.

You don't know how that helps newbies like me.

My consultant has finally said that she's going to go forward with a partial mastectomy on my rightie but still seems worried about my leftie.

This is despite me going to another hospital to have an MRI led biopsy during which they could find nothing to biopsy!!

So she has decided I need a vacuum biopsy on leftie to find out what's going on.

So at the moment o have a date in two and a half weeks for surgery pending these new biopsy results

My head is spinning because I've had almost two months of testing and more biopsies than I can shake at scalpel at!!!

But reading these threads are reassuring in the mean time.

I'm prepared for anything at this stage, just bloody do something!!!!!

@GrannyGoggles as ever, leading on the positivity and wellbeing. You are a welcome
port in this storm. Can you please let me know which oil you used on your scalp. Mine is uncomfortable enough even before chemo.

I’ve also been given some polybalm treatment to paint onto nails to help to protect those.

@frostyfingers I’m truly sorry to hear what a shit week you’ve had. This is the most rubbish of times. Keep bloody going. 💐

I second @dancingwhilstfacingthemusic with a shout out to @grannygoggles! Thank you so much for that positive post on hair loss. Why do people put it so low down on the list. It's horrible ..but your words are so encouraging. Thank you.

And to all you ladies getting yet more tests. I was you in June. Over 4 weeks of extra tests including bone MRI, ultrasound of womb x 2 (not happy with first one) and me waiting for the phone to go after every flippin MDT meeting. Asking when will anything happen? At that time I was frantic. Hang on in there. It is horrible.. but it will get better. I am sending virtual hugs and hand holds. Xx

@frostyfingers that is shitty. All we can do is keep on keeping on. Thinking of you x

@GrannyGoggles I agree with PPs, thank you for your sympathetic but sensible advice to us all. Especially about the oven! My head feels a bit sore, but mostly itchy! Very annoying. My wig lady cut a fringe into my wig, but wanted me to live with it a bit before thinning it out. So I will. I have got one of those wig band things but didn't use it today. I am visiting a family member in residential care tomorrow, not sure how they will be about the wig ...

@drivinmecrazy gah also to onward and further testing. It seems that every clinic brings a new prize from the tombola of doom.

@BatshitCrazyWoman @somewhereonthe517
@GrannyGoggles @dancingwhilstfacingthemusic Another one early to the hair loss and wig stage. I've been out and about a few times with the wig now, was uncomfortable to start with as had just had head shaved, but it does ease off, a wig sock made mine feel too tight. Nobody seems to be looking at me, and partner and friends have reassured me they only know its a wig as the colour and highlights are slightly different to my own hair. Got my hairdresser to trim the fringe so looks better. Agree scalp very uncomfortable to start with- I had to sleep with a travel pillow round my neck to keep head off the pillow, but a week on it seems to have settled. If it helps, this time last week I was distraught as hair had been falling out in clumps, and swore I didn't want anyone to see me. Roll on 7 days, I've been out to see a show, and nipped into my local where my friends work, and been to the shops, all wig on, and felt fine. Not quite out with nothing on, but even managed a couple of outings in just a wooly beanie hat as well. Dangly earrings and make up def help the look for me!! It really did for me get easier once I managed to say fuck it, and I took control back and made the decision to get the hair shaved off. Big hugs to all xx

I think for me the hair loss was the worst part. It was expected but sudden. The first stage in appearance changing and the first realisation that “oh shit this is happening”

I’ve stopped with the hair coverings for now. Just wearing my hair up in a stubby pony. I have enough still that I can comb it over…!

I am also wearing a silk sleep hat to stop my hair rubbing on my pillow (Amazon). So at bedtime I look like dobby the house elf.

my oncology team have been amazing. Yes they’ve said it’s “only hair” but they are very understanding. Two of the team have been patients on the ward. So have real life experience. They gave me details of a lady who is a hair loss specialist so I have an apt with her next week. Essentially to see what I can do to help my hair now and help my scalp now and to help regrowth.

my wig isn’t here yet.

next session for me is Wednesday. Bloods Tuesday. everyone else in my house has a cold. Ffs.

im also in the process of booking a sunshine holiday for February. My last two booby holiday.

https://www.champohaircare.com/products/growth-serum?gad_source=1&gclid=Cj0KCQjw6oi4BhD1ARIsAL6pox09UvN-UIVclUTfUNt8DQro5_7e0-dur8ZA4fGCM2_5-ye8d06O-bQaAkQYEALw_wcB I used this when chemotherapy was done
and Eucerin scalp treatment during. I think it’s real trial and error, what suits one doesn’t work for another.

Thanks! I already have a bottle of this and was looking at it thinking it might be awhile before I use it - glad to see if may be useful. Thanks also re the eucerin tip although I appreciate it may be trial and error.

Fed up today. Went into town yesterday to have an hour out for the first time and treat myself in this gap before chemo. My drain wound had been fine in the four days since it was removed. However, somehow it leaked massively, soaking all of my clothes (top, trouser and undies). I couldn’t deal with the mess myself, having checked it out in a disabled loo. A kindly first aider chap helped me with sterile dressings and privacy so I could check it was “just” the drain site, looking after me whilst dh came with the car. After a cleanup at home I applied a pressure dressing and it seems to have stopped. I’ll phone clinic tomorrow (am still on antibiotics so hopefully covered!).

and you, Boots, yes I’m staring at you. When a woman with a sizeable bloodstain on her front, back and side comes to the pharmacy counter to buy large dressings and asks for a quiet place to check what’s going on and to clean up, the answer is not to send her five minutes away to another shop’s disabled toilet.

normal up and at then to be resumed but ffs!!

@dancingwhilstfacingthemusic .... ooo shame on Boots. I am a bit shocked by that... would have definitely expected better. What a crappy experience. And why do these things always happen on a weekend. I swear my body could sense the BC nurse team logging off for the weekend then chucking a new issue in the mix.
Hope your day got a bit better xx

Thankyou @somewhereonthe517 today has been a better day - and yes, definitely to the body sensing bc nurses are out of contact!
I’m emailing the first aider’s workplace to thank him and will also email Boots - being offered a seat and a first aider should have been a given there - it was so much worse whilst I walked to the indicated disabled loo in another shop.

@dancingwhilstfacingthemusic shame on Boots 😡 And how awful and worrying for you.

@GrannyGoggles ive been looking at the Champo serum/oil stuff and wondered if it worked. I’m cold capping and have about 60% of my hair left with two rounds of chemo to go (out of 6) so I can just get through those….- I have a couple of baldish patches at the back but hopefully will use something to help and regrowth and just cover them for the next 5 weeks…. My lovely MacMillan volunteer buddy recommended the Cornish Seaweed Company also for growth post treatment shampoo - and magnesium foot rub for restless legs and better sleep.

For those of you having tough mental health times but don’t quite think they are ready for full counselling I’d recommend MacMillan buddies - https://www.macmillan.org.uk/cancer-information-and-support/get-help/emotional-help/macmillan-buddies

I think Breast Cancer now does something similar.

Had a meeting today with the surgeon - any help interpreting things v welcome.
I had a standalone sentinel lymph node surgery 2 weeks ago.

He told me today that he removed the 4 sentinel lymph nodes, and in one of them there was a 4mm tumour.

The plan is mastectomy (as planned), but then I will need:

• radiotherapy to the other lymph nodes and breast skin etc.
• a more extreme hormone drug - not tamoxifen, but two things at least one of which is an injection.

And probably not chemo but it depends. The cancer in my breast is (I thought) grade 1, but he is now saying that occasionally they find the grade changes when they examine it after surgery. I know that there at 2 bits, but possibly 4, the largest is something like 26mm, or maybe 30mm.

One thing that is worrying me is the plan to have radiotherapy to the other lymph nodes instead of taking them out. Surely if we don't take them out, then we can't check how many have cancer in, so can't know the stage, and can't know whether it has spread and whether chemo is needed? But he quoted a study showing that the radiotherapy is as good as taking them out and has some advantages.

Basically - I am panicking (check out my username) all over again about whether the cancer has already spread all over my body and I'm going to die. I'd be v grateful for any help. Sorry I'm putting this all like this. But I'm just scared.

(Oh and also I'm alarmed at the idea of extreme hormone suppression drugs. Don't hormones affect your personality and emotions? Will I for example still be a loving mother to my (admittedly older-teens-rather-that-toddler) children if they stop all my hormones?)

@breastcancerpanic sorry to hear you have been panicked by the new information. One of the frustrations of dealing with cancer is that just as you think you have a plan and understand things they change again. You could ask your BCN to go through things with you and explain it again. That might help.
I can reassure you that being on hormone blockers does not change your personality or stop you feeling love for your children and wider family! I am quite sure you will be just as loving a mum with or without oestrogen. Think of how loving grandmothers are despite their postmenopausal state!

@TopOfTheCliff Thank you! Yes, I think I understand now. I didn't realise that the hormone blockers would just put you into a postmenopausal state - I thought it might be more extreme than that. Of course if it's just like being postmenopausal, then this is fine... my mum is postmenopausal, and even through the haze of advanced alzheimers I still feel extremely loved by her!

Does anyone know - if 1/4 sentinel lymph nodes are cancerous, then likely how many lymph nodes in total are cancerous? Sorry for all the questions.

@breasbreastcancerpanic Is it possible you only have 4 axillary lymph nodes? My understanding is everyone is different, some have 4 lymph nodes some have 30. Also I had a full axillary lymph node clearance but will still have radio therapy after chemo on the other lymph nodes located in the area. I think there are two chains they target as they can never remove through surgery. In the neck and breast bone area I believe.

Having said all that I have read some people where radio therapy is offered instead of lymph node clearance in some cases now. I always have questions after the appointment.. I can never think straight on the spot. I'd ask them to go over it again anyway.

@somewhereonthe517 thank you for replying! I'm pretty sure that the plan is to have radiotherapy instead of full lymph node clearance.
I'm very sure that I just had the sentinel lymph nodes taken out, and there were 4 of them.
I've been googling (apologies) and think he is following this study (as might even be standard practice now - I'm not sure...): https://www.thelancet.com/journals/lanonc/article/PIIS1470-2045%2814%2970460-7/abstract#:~:text=Axillary%20lymph%20node%20dissection%20and%20axillary%20radiotherapy%20after%20a%20positive,results%20in%20significantly%20less%20morbidity.

Panic do you have a named BCN, and/or can you call or can you email your unit with question between appointments?

I can’t answer your specific questions but wonder if it might be helpful to keep a written record, if you’re not already, and list the questions for your next appointment. I started to use Voice Memos as I found myself concentrating on writing rather than listening to the next chunk of information. Writing during the meetings, then listening back and writing it up helped me to get some clarity and organise my thoughts. Both surgeon and oncologist annotated the notes on occasion.

(It was SO cathartic burning those notes when I’d finished treatment)

Are you able to take someone with you when it’s going to be a ‘big’ appointment? We stop hearing stuff sometimes, when we’re have to listen to complex, frightening and unwelcome information.

And like Top, I think you’ll still be a loving mother whatever your hormones are up to

@breastcancerpanic after my sentinel node biopsy 2/4 were positive for cancer. Like you, my treatment plan is radiotherapy rather than a full surgical clearance as apparently studies have shown this is as effective as surgery, but with less risk. The cynic in me also assumes it is also much cheaper. This maybe slightly naive, but I am choosing to assume the MDT planning my care give me the treatment that gives the best possible outcome.
I did query it with my BCN and she was happy to talk through their reasoning.

@Nomorebear Yes - I think you are right. I also think that the care I'm being given is the best. I just have the desperate need to have all the information... if I could be sure that I would not die of this, then (I think) I would be fine. But that certainty is just not something they can give me.
@GrannyGoggles I had my dh with me, and he takes notes and helps and asks questions! It's just that I didn't think of the questions at the time. In fact I have a meeting with the breast cancer nurse on Thursday anyway so I can ask her more then. But I think posting on here and googling (again, sorry) has answered my questions about the numbers as much as they can be answered.
It's just all a bit shit isn't it?

@breastcancerpanic I would take the positive from this in that they won't suggest things if they hadn't considered risk to you. I had more lymph nodes with cancer in them so I skipped this possibility and went straight to needing them out. I do worry about the issues of having no lymph nodes in that arm will mean going forward but for me I had no choice. It is as you quite rightly state..just different levels of shite! But the ladies on here ..you included..make me feel less alone!

I wish that study had come out before I had my first cancer treated. I had a socking great lymph node that was bigger than my original breast lump so they scheduled full clearance of 30 axillary nodes. None were affected at all! I have had a fair amount of scarring, pain and swelling that side, but luckily no lymphoedema and no recurrence. With time the treatment is getting more targeted and more mindful of the life we have to live after cancer thankfully.