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.

"AgreatUserName" Im so pleased for you!

I swam! That's my news.

Well Im going to bang on again about my balance problems which seem to be getting worse. Had hearing test today which shows slight loss in right ear but audiologist does think it would be causing the unsteadiness. So I worrying mys
self sick again that its something to do with the ovarian cancer, which sometimes metastasises to the brain and all manner of other dire diagnoses.
Difficult enough to get a GP appointment at the best of times, but now its Christmas! Im considering trying to get a private MRI but still need a referral.
Sorry to go on but I live alone and dont want to whinge on to my friends who are not in the best of health, but you lot can bear the brunt !

@thereisonlyoneofme - how’s your eyesight? I went through a phase of falling over and feeling unsteady on my feet and it turned out to be caused by my eyesight. There’s such a strong link between the senses it’s very easy to be puzzled by symptoms we have.

MrsTumblebee My eyes are OK . Im beginning to wonder if its Menieres but I Im sure thats intermittent not permanent. Im going to book a private GP appointment at private hospital a few miles away, hang the expense, at least I may be able to get an appointment.

I’ve just had my results back and it’s not looking good. A 5cm grade 3 tumour which has spread to the lymph nodes. It’s her2 positive as well which I believes makes it more aggressive.
Im dealing with the frustrations of the holiday period now as I have to do even more waiting as they need to scan to see if it’s spread before starting chemo. Apparently it’s 8 lots of chemo to see if it stops the tumours and then surgery.
I'm still processing it all. I’m currently on the way home before I have to stick my smile on for my children and wrap, wrap, wrap. I can’t believe this is happening.

@thereisonlyoneofme when I lost my hearing I was fast tracked for an MRI of my brain. My specialist nurse said if I had rung her she could have sorted it quicker. Do you have one who might help?

@Whattodotomorrow my first tumour was similar to yours. Grade 3 Her2 positive and spread to the lymph nodes. The good news is that chemotherapy works extremely well and they like you to have it before surgery then carry on with Herceptin afterwards for up to a year. Many people, me included, get a complete pathological response to treatment. Don’t be scared of having scans to check whether it has spread. Remember Knowledge is Power and it will help your team plan the best tailored treatment for you. This is bread and butter stuff to oncologists and they almost certainly be giving you radical curative treatment. You just (!) have to endure the course and get through to the other end. You can do this! Smile for the children then rant and rave here as we understand the mood swings and the fear. It will be a very strange Christmas for you. Sending hugs xx

My Christmas present has been the private genetic results from Color.com which arrived today. All negative! Phew… I am still just the unluckiest person I know. Still negative for Covid though and DH is feeling fine at his end of Tops Towers.

Sending best wishes to all
Top x

@thereisonlyoneofme I'm sorry you're so worried and totally get not wanting to burden your friends with your concerns, I'm the same. I too would get a private GP appointment, there's one here which offers same day appointments and is around £100 for a consultation. Just to be able to talk it over with someone who won't rush you away would help and hope that an MRI would bring you reassurance, the waiting and uncertainty is torture.

@Whattodotomorrow so sorry to read your news. The BC ladies will be able to advise better than me but I am thinking of you and your family Xxx.

What So sorry to hear your news. I had similar news in Nov last year and just had my sign off from treatment yesterday, well apart from hormone tablets for 10 years and reconstruction surgery in 2 to 3 years. Its scary and a rollercoaster but the end will come and hopefully this time in a year you will be all clear too.

@Whattodotomorrow just chiming in as a longtime lurker to this thread. I'm so sorry about your diagnosis, I remember how shocking it all seems. I was diagnosed six years ago at the age of 39 with stage 3, grade 3 Her2+ ER+. The cancer had spread to my lymph nodes too, they were stuck together and you could feel them - it felt like a pound coin under my armpit. I was also told at the first appointment that it was likely cancer. I felt like a dead woman walking coming out of that appointment, after all the sad faces of the nurses etc. My kids were 4 & 7 and all I could think about was how they were going to grow up without me.

I'm still here nearly 7 years on and AFAIK fighting fit. You're at the worst stage right now, you've had an enormous shock and no info yet about treatment. Once you get your treatment plan you'll feel better, the treatments for this type of cancer are fantastic and there are more being developed all the time. Let yourself process the news and feel free to message me if you want any support. This thread is amazing and there are lots of other women on here who have similar stories to me.

@Whattodotomorrow - I'm sorry to hear your news, but echo what others have said. It's not at the 'quick fix' end of the breast cancer spectrum, but it is treatable. I am HER-, but otherwise quite similar diagnosis- node positive, mid-sized tumour, grade 3. I was diagnosed in August and am going through treatment at the moment. Obviously, it's shit and scary, and no one wants to be here. Especially at Christmas, and with little ones. But it's doable and you will get through it, one day at a time. Feel free to ask questions or just vent - this thread has helped me a lot.

@TopOfTheCliff - long may the Covid stay away from your end of the towers. I'm so sorry about your ruined Christmas plans xx

Can't sleep. Was getting settled fr sleep and thought I have cancer. I almost begged for a hysterectomy four years ago and was told I'm to young at 44. The surgeon has handed me a death sentence I want to kill him. I'm not a middle class woman so I'm worth shit. I

@Whattodotomorrow another lurker here chiming in - also (was) grade 3 but still Her2+. What a rubbish time of year for a diagnosis. I had no lymph node involvement, but did have to have my nipple removed a few weeks ago to ensure clear margins. Had a mastectomy + immediate reconstruction early Nov following diagnosis late September. Consultant has confirmed that there is no further evidence now of cancer, but i will still be starting chemo in Jan, which they decided to do after my op. I’m probably going to go private with same consultant and get the other breast removed once chemo is done. Reiterating what everyone else says - the very worst time I have had so far was right where you are now, it gets much, much better once a plan is in place (even if that plan changes and it feels like a step backwards, it’s not, having all the info is so important) my GP prescribed a light dose of diazepam which really took the emotional edge off for me and helped me function normally between my diagnosis and the first operation, I haven’t neede it since. Ive overhauled my diet to cooked from scratch, sugar free, low fat and plant based and the dog is being walked like never before to ensure I get outside and get my steps in - all the little things I can control and improve as I’m 100 % certain my cancer came from divorce / moving from one end of the country to the next / new job stress and poor diet. Really not looking forward to chemo but as everyone says it’s highly effective.

@Vaccine001 talk to your GP who will help you. I was told mine was likely cancer prior to diagnosis too. What type of cancer is suspected ?

@Vaccine001 - hope you got some sleep eventually. I think a lot of us struggle with sleep and it does make everything worse. I listen to podcasts, and I know others have prescriptions for sleeping tablets. I'm sorry you feel you haven't been listened to and don't count - that sense of being a small cog in an unfeeling machine is horrible. There are people who will listen, though - you can vent here, and the various helplines can be very good (though in my experience it depends a bit on who you get to speak to.)

@Sleeptillnoon - thank you for posting. I do find it very comforting to hear from people a long way down the journey.

@Sleeptillnoon thank you for your story. It has given me hope this morning. I hope you don’t mind but once Christmas is out of the way, can I message you please. It sounds like our situation are/were similar as I’ve kids of around that age. My mind is just boggling at the impact and logistics it’s going to have on them, especially the chemo.

And thank you to the others who have offered support. I know time is of the essence and the timing is dreadful…I really do feel isolated by the medics already. Told I had cancer…come back in 10 days. After my appointment with the consultant yesterday I went to have bloods. By then I knew I needed a referral letter for a private scan (he said the initial letter would be enough) but he had already left! I’ve a fight to get a letter on Weds for a scan on thurs so it can be discussed at the weekly meeting on Fri. Otherwise it’s another week I’ve lost.

I'm sorry if I haven’t commented on anyone else’s situation. I’m thinking of you all.

@Whattodotomorrow what a pain! Have you been given a breast care nurse? They can be variable but they are there to help you navigate all this, and they can also help with any questions you might have in between consultant appointments.

Feel free to message me, I was lucky and had lots of help from family but it was still hard. In cancer terms, it's a lot of treatment but you just have to take it one step at a time. The chemo is the worst bit IME, and you get that out of the way first.

Good morning all
I am so sorry for all of us dealing with difficult news this week. It can’t ever be easy getting a cancer diagnosis but at this time of year it feels even crueller somehow.
I also received a breast cancer diagnosis yesterday but feel I shouldn’t really be posting as it’s stage 1 grade 1 ER+ HER2- negative so apparently at the less aggressive end of the spectrum. I’m having a lumpectomy some time in January then one week of radiotherapy. If the sentinel lymph node is negative that will hopefully be it for me and I can leave the rollercoaster. Thinking of all of us wading through the mire and hoping 2023 will be better.

A bit of an odd question possibly and not important compared to what others are dealing with, and probably one for my BCN, but you know how we obsess.

Before treatment I had skin tags under both arms I was planning to have removed because they were rubbing on bras. I was told to leave them alone initially just because we don't know what my treatment plan would be, how long till surgery etc.

Anyway since radiotherapy, the one on my treatment side, which sits in between my surgery scar and the exit point from radiotherapy has gone brown (like the exit point skin) and has, I'm convinced, grown.

I'd still like to have them both removed for when I attempt to wear normal bras. Any thoughts or experience appreciated.

That's good news, very similar to my diagnosis, don't underestimate the experience is still a challenging time with surgery and radiotherapy but the outlook is at least likely to be positive.

I had to see (a different) breast consultant yesterday, as the hematoma has caused my wound to open. DD and DH have a great Christmas present - re-dressing it every day until the hospital opens on Wednesday!

Whilst I was being examined I did say that I had noticed that I seem to have developed moles under the crease of my breast, and the chap said that they often change following radiotherapy. Like you, I shall get them check out once the main treatment is over.

Wishing everyone the best Christmas possible under the circumstances - whatever they may be.

@MrsMontyD I had a few axillary skin tags before chemo that shrank right away during treatment and having slowly grown back again. They are benign and can be removed easily. The traditional treatment is tying button thread tight round them till they drop off. The brown one probably got fried by chemotherapy. Very unlikely to be sinister. (I am a retired GP)

I am having a bad-tempered day today. After getting through Chemo for BC I am now moaning my way through Covid. DH has tested positive but my tests are still negative so no Paxlovid. I’m sniffly and tired but not ill. I have however got the rage today at all my lovely Christmas plans being scrapped. I’ve been blocked twice on Twitter for blasting some #curecancerwithdietcrap posters and I refused to answer the door to an annoying friend of my DH with appalling children. I am truly evil today! Fuck off 2022!

We need a shiny new thread on which I shall be good and kind and civil.
Happy Christmas to all xx
Top

Fried by radiotherapy not chemotherapy oops…

New thread started here-

www.mumsnet.com/talk/general_health/4704680-cancer-support-thread-85-hoping-for-a-positive-2023

@chubbychipmonk how did you get on? I am in the same boat. Large lump on pelvis,
extreme weight loss, muscle weakness and fatigue. Been referred for urgent x-ray on 9 Dec, but waiting for a month now! I have a newborn baby who is 2 month old and I waited for
him seven years. I don’t see how this could be anything else than advanced cancer (doctor told me they were concerned) and I am breaking inside.