Cancer Support Thread #81 Newbies welcome

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This is a kind and friendly place for those with cancer or those worried they have cancer (or who used to have cancer) to hang out.
Please introduce yourselves and chat away. No issues are too big or small here.
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Welcome @Justalittlebit10 to the group none of us wanted to join. It sounds like your cancer has been found at an early stage and hopefully you will have treatment plan soon.

@Justalittlebit10 Welcome, I'm sorry to hear about your diagnosis, you are in good company though, this is an amazing groups of strong women, who can support you through anything.

Telling kids is one of the hardest things, I had to tell mine two weeks ago, how old are your children?

Hi, they are 22, 18 and 12. The 18 year old is about to sit his A levels, and the 12 year old is currently home ed due to severe anxiety so it's her I'm the most worried about.
How old are your children? And how did they take it?

@Justalittlebit10 mine are 19, 16, 14, 14, 11... the youngest has been fine, she's nearly 12 and even though she's had problems with anxiety in the past I think she trusts me. My twin boys were really upset, one of them had overheard the name of the cancer before Christmas and googled it (GIST) and hadn't told me he knew, I really regret not telling them sooner, initially I just told them I needed an operation until I spoke to macmillan and they advised me to be honest and said it was best to tell them all at the same time so they all knew the exactly the same. A couple of weeks on and they have settled with the news and have asked a few questions. I'm single, divorced from their dad now but separated five years. One of the hardest parts for me is the fact that they live with me full time and I don't have a partner. Normally I'm really happy being single but at the moment I feel very single and I'm having to rely on friends a lot.
I hope the talk with the children goes well, I was very upbeat about how lucky I am that I can have the surgery and I think that helped a lot. Big hugs, this was the hardest part for me so far.

@Justalittlebit10 I know its disappointing news and its easy to beat yourself up over not booking a mammo sooner. However, given how small it is, its quite likely that HAD you booked two years ago it would have been too small to catch. You could have gone on your merry way for years thinking you had an all clear while it was growing larger than the size it was caught at. Either way, your instincts to push for the mammo were right and you have a really excellent prognosis. Its not to diminish the anxiety of cancer, but to perhaps provide a different take on the situation.

Ladies who are taking olaparib - I have to swap over to this drug as palbo has started to fail. I know it can cause some nausea - any tips/tricks for taking it? Best to take with food or early in the day, etc?

@HerbalRefreshment I started taking Olaparib in November. I did have quite bad nausea and try to take the tablets with or after food. The good news is the nausea cleared up after a month or so. I also had bad stomach pains. I then stopped taking it for 10 days after Christmas as my DH had Covid and I had a positive lateral flow (negative PCR) but they thought I'd catch it. I felt really great and had loads of energy for those 10 days off. When I went back on the Olaparib I felt really poorly and fatigued for a good couple of weeks. Perhaps I didn't notice it first time round because of the chemo. No nausea now, but I do get dizzy spells.

Apparently the side effects of Olaparib lessen over time.

@Justalittlebit10 so sorry to hear about your news. I
hope your MDT has devised a suitable treatment plan soon. As PPs have said waiting is the pits. I have been coming here on and off for the past 5 years and it’s a place where I don’t feel too guilty for pouring out my greatest fears, frustrations, etc. I hope you find a good (as much as it can be) way of letting your children know. I have a DS9 who was 4 when I was initially diagnosed. He is a bit more savvy now and we don’t keep anything a secret. I just hope to be around to bring him up for a while longer.

@MissSmiley how is the quarantining going? My DH tested positive this morning while I was in hospital having my CT scan. I am now bricking it on both accounts - being next on the Covid hit list and hearing about the scan (7-10 days). I am petrified and have been reaching for my box of beta blockers. What a shit start to February!

I could barely calm myself down at the scan, although I felt much better when it was out of the way and on my way back home. Then got all tied up in knots when I heard about DH’s positive test.

I forgot to say I still keep testing negative. 🤞

@BG2015

Hi Lou, I am sorry to hear that you are going through this. It sounds like you are doing great considering how busy your life is with family and work. Being a primary teacher is a very active job. Support group is so important. It is very nice that you can share your feelings with your friends and family.

So far I have had one core needle biopsy and the biopsy result was B3a lesion - uncertain malignant potential without atypia suggestive of radial scar or complex sclerosing lesion.

I am going to have an excision biopsy under general anesthesia next week and the mass they remove (2cm ) will be biopsied. I need to wait for another 3-4 weeks for the final diagnosis. I am finding it hard at the moment.
We have not told parents. Just my closest friends know.

If any of you lovely ladies have any advice about excision biopsy please share with me.

All the best. Take care.

@Cratos, i just had one january 7th. although in canada.
it was smooth and easy. fully put to sleep woke up with little to no pain.
the surgeon was considerate when choosing his approach.
there was no noticeable tissue loss, i had no excessive bruising. results back in 10 days and resuming exercise by 14 days.
i wore a decent supportive shelf bra (lulu lemon undershirt combo).
no pain medication needed post op for me. wish they had gone straight to this vs the needle biopsy attempt (unsuccesful).
result was non cancerous.

@fallfallfall thank you very much for your response. Your experience sounds like it was fairly straight forward.

The doctor said they will take about 30 gr of tissue. Hope this will remove the complete mass which is about 2cm.

I am not sure if they always use a 14 gauge core needle to diagnose cancer but I read that this is a small needle size and it doesn't always give reliable results for some benign looking lesions. Hence I need this procedure now. I wish I had this first too instead of waiting 4-6 weeks longer.

Long time poster here.
Just been for my yearly bloods taking. I will then await a ct scan next month before being told results.
Anxiety already kicking in. Weepy and snappy.

Love to you all x x

Just had my final chemo this morning! 19 weeks of my life taken up with this shitty disease and treatment but there have been more good days than bad!

It's tough but totally doable! Anyone about to embark on the chemo train you can do this!

Hi @BG2015, I totally needed to hear that today.
I'm am totally dreading it. Thank you.

@Justalittlebit10

Hi *@BG2015*, I totally needed to hear that today. I'm am totally dreading it. Thank you.

It will go by so fast, believe me! I didn't think it would but it really will.

Thank you, really good to hear. How long after surgery did you start the sessions? And how did you feel between them? Sorry for the questions.

I had results from my second breast cancer operation yesterday, full lymph node clearance, very stressful as an hours wait alone for them which I did not cope well with, but results were no further lymph nodes cancerous. So overall I have 1/25 lymph nodes removed had cancer and the 5cms 2 tumours combined were removed (46mm and 17mm both lobular, her2 neg, er 8/8, pr 8/8) in mastectomy in December. So in theory all the cancer is out now via surgery.

I have a valentines day next appointment, which has been shifted to video as I was so distressed, which is good as it means husband can be with me and can stay home. They are recommending chemo as 6% benefit over 10 years vs 3% risk over 10 years so 3 women in 100 survive more over 10 years but the data does not distinguish between lobular which has a poor response to chemo and ductal which has a better response. I am trying to get the oncotype test as in the US with my results they now have moved to deciding if chemo or not based on that to avoid giving chemo when no benefit. Currently NHS policy is with a node involved you have to pay private around £3k for this test, no nodes involved and 3 to 5% benefit NHS pay and they recommend chemo from 5% over 10 year benefit based on Predict. The surgeon is seeing if she can get mine funded as an exception and also apparently I qualify for a trial as I am on the border of recommending chemo and 50% of trial get oncotype test then either chemo or no chemo depending on result and 50% get just chemo but you could be put in either group though can withdraw at any point. I can also still say no to chemo after they said and they said their recommendations are just based on longevity of life not quality of life. DH has said he will pay for it if they won't which is very unusual of him to part with money so he must love me. I do love my data as an Economist (well before becoming a full time cancer patient and child problem sorter!) so I really want this test.

Well done on reaching the end Bg I also have my endocrinology blood tests through for 23rd March to see if the mass there is hormone producing, they think its benign but maybe adrenal condition, I presume looking for Addisons or Cushings. Would be good to know as I first asked for these tests in 2018 as scan showed an adrenal mass and have symptoms like Addisons though could also just be some random benign thing which just grows.

Also I am getting added to a counselling list which is great and the surgeon said why did you not bring anyone (as I am not allowed) and she added me to the allowed list. Not that DH will be much help and half deaf but it was nice surgeon cared to do that.

I will have radiotherapy and hormone therapy whatever the chemo results which is fine, its right breast so radio should be fine. Have a few days away in Scotland next week and an amazing weather forecast, 3 days are hail storms and 1 day rain. At least has a good pool and they said I can go swimming but no front crawl, I can do backstroke (well if I can move my arm that much!), extended doggy paddle and breaststroke which sounds great to me. Just hope pool isn't too rammed as not sure who will be going out in hail storms probably my ASD DS

All the best to everyone else.

Is there a forum on MN for family members of Cancer sufferers? My Mum has cancer (untreatable) and I could do with joining a support thread.

@Silkierabbit That’s a positive that no more lymph nodes were cancerous. I’m slightly surprised at the swimming advice though as back stroke pulls my anc scar more than front crawl does, maybe the doctor that gave you the advice is not a swimmer.

@Justalittlebit10 I had my surgery on 7th April, had final wound check with surgeon on 29th April. I was told there was a 5 week wait for oncology so used my insurance and saw the oncologist on 4th May and chemo started on 11th May. In between those dates I had an echocardiogram and blood tests too.

@Kezzie200 sorry to hear about your mum, what kind of cancer does she have? How old is she? You're welcome to talk about her here

@Silkierabbit I hope you manage to enjoy your few days away, I'm thinking of you

@BG2015 it's a big chunk of time, no chemo available for my kind of cancer, I feel a bit if a fraud but hopefully they'll get it all out on Monday anyway

Hi to everyone else, I'm so bored of isolating and desperately sad I can't hug the kids in the few days before I go into hospital. Still have to get my negative PCR on Friday to enable it all to go ahead on Monday. I've been feeling very low the last few days

Shes late 70s. She only fell ill 6 weeks ago. Bowel and mets in liver and peritoneum. She went into surgery but they couldn't do much so created a stoma to allow her to eat and drink. She may be able to have palliative chemotherapy but they will consider the options next week.

I'm in shock to be honest.

MrsPNut I also wondered if the nurse who said about the swimming wasn't a swimmer esp the lymphoedema site online recommends front crawl and breaststroke exercises but not backstroke from what I remember. She did a backstroke impression which was more like a small wave though did not like to say anything. I have been doing them all anyway, living life on the edge here.

MissSmiley So sorry to hear you are feeling very low, very understandable with such a big operation looming and isolating. I get very low at times then bounce back. I have to remember when I am low that the feelings pass and to take things a day at a time and also have a few days away booked has helped a lot - even if the forecast is now hail, strong winds, sleet and rain. I guess it maybe a while before you can do much but you can book cancellable hotels on booking.com and I find just having something booked gives me something to distract me though they may kick me off for number of cancellations. Feel free to PM me as well if you ever want to chat.

Kezzie Sorry to hear about your Mum, its horrible when they catch it very late on though its good she has you to support her. Macmillan are good on advice, all the cancer charities have good websites and forums and we can try and help here too.

@Kezzie200 I’m very sorry to hear about your mum, this thread may be able to offer you support and advice www.mumsnet.com/Talk/life_limiting_illness/4332263-Thread-for-those-who-have-a-parent-with-cancer

@BG2015 It really does take such a long time, I was diagnosed in Nov 2020 and still haven’t finished treatment. I thought I was close and then the hole opened in my chest so who knows what will happen now. I desperately want to go back to work but need to have finished really before I do.

@MissSmiley not too long now - hang on in there!

@BG2015 well done, it must be such a relief. A king slog but you made it!

I am going out of my mind with this constant throbbing I have been expecting in the coccyx area. I have had it since January - it would start after a run but was on/off and would gradually go away. But now - last run I did was last Thursday, was sore straight after, then the throbbing went away, only for it to reappear on Tuesday evening and has been there ever since. I haven’t taken any painkillers as it’s not painful but it is tender/annoying and my mind is swirling. So much so that so that I dreamt I soiled myself last night. I am so wound up I will phone my BC nurse this morning.

DH has Covid now, DS still keeps testing positive, I am negative but there’s nobody to cry to/speak to about my utter petrifaction, I feel like I am going crazy with worry and have convinced myself it’s now metastatic. My bloods were fine in December but who knows, this is a disease that cannot be trusted. I keep thinking of Olivia Newton-John who thought she had sciatica but turned out to be bone mets.

Sorry about all this, I just need someone to talk to but even writing this down helps. Off to leave a message with the breast clinic.