Cancer Support Thread #80 Newbies Welcome

[HumphreysCorner]

Welcome everyone old and new. Feel free to post a quick update to help new and old follow.

HC x

@PhannyPharts thinking of you. You are having the same treatment I had just the other way round so you are getting the worst one over with first. The weekly ones I was ok with but the 3 weekly double dose was not so easy but nothing as bad as EC. Just take plenty of sickness meds and steroids when you need to.

HC x

I'm 51 with a DH and DD1 17, DD2 14 and DS 11 and was diagnosed with triple negative Invasive Ductal Breast Cancer just before Christmas. I've had weekly chemo for 12 weeks the 3 x3 weekly EC chemo. Had an MRI last week which shows the cancer has gone. I am waiting for an operation in the next 4 weeks which will involve a cup reduction as the surgeon uses tissue to fill the gap. He's hoping to save the nipple as the cancer was very close to it.

My family are very supportive and tell me to get on with it as I have no choice which is exactly what I need. Having cancer has totally changed my outlook on life and my stress levels are so much reduced which equals happier me and happier family.

HC x

Ps, don't know how to link from the old thread.

HC x

Thank you for the new thread HC

I have ovarian cancer stage 3c diagnosed last December. I have had 4 cycles of chemo followed by surgery and have one more cycle of the current chemo to go. After that I will have maintenance chemo for 1-2 years. I am in my mid 50s with an adult DD.

Top oh gosh, I do feel for you, the hair thing is a huge deal for me too and I find it all so upsetting. How disappointing that your friend was unable to respect your wishes. I have been told by a friend that she knows someone who had chemo and 'her hair grew back beautifully thick and wavy, just as it had been before'. Seeing as she had seen mine before I lost it and knew that my hair was 'adequate' this made me feel even worse. Other friends have reassured me that my hair 'will grow back' - I have never indicated this worry is my problem, only that I feel self conscious about my current bald state so this feels insensitive. The hair loss for me is an outward sign that I am ill and I truly hate it and don't want to draw any attention to it.

@PhannyPharts I am on both those drugs currently but I have them together once every 3 weeks. The side effects have been severe constipation, some nerve and bone pain, a little nausea plus loss of appetite, these symptoms are for a few days to a week. The main issue for me is the ongoing tiredness, I seem to have that every day.

@MrsPnut I got the other no 8- thread deleted as people were posting to this one.

I'm late 50s, married with dd15. Diagnosed Her2+ BC last Nov, had 4 x docetaxel/Herceptin/pertuzamab then 3 x EC, then surgery (lumpectomy, complete node clearance and bilateral mammoplasty). Pathology showed residual tumour and 7 affected nodes - so will be having targetted chemo after radiotherapy (14 x 3 weekly Kadcyla).

Now waiting for my blasted surgical glue allergy to die down so I can start radiotherapy. Surgeon was relieved to see it is clearing up today - but still needs 2-3 weeks to be clear enough.

This is the next stretch where ongoing treatment combines with working life - it's the mental focus that is challenging.

@PhannyPharts EC was tough going (and I didn't respond to it at all either )

A brief history for the new thread
Hello, I am 45 and was diagnosed with vaginal squamous cell cancer grade 2 back in November after a smear test and colposcopy. I was sent for a CT scan afterwards as vaginal cancer is a rare primary to have and it led to a diagnosis of invasive ductal cell cancer in my breast and lymph nodes as well.

It turns out that they are not linked and I am just unlucky to have two together, I was on zoladex and anastrozole for the breast cancer as it is ER and PR + and have finished chemo rads and brachytherapy for the vaginal cancer.
I’ve had a double mammoplasty with full axial node clearance, which did not get clear margins on my tumour and there was extracapsular cancer in the tissues removed from the axilla so I need a further operation. Currently having FEC, 2nd of 4 is next week then 4 docetaxol to go before second op and radiotherapy.

Sorry I couldn't find another thread x

Sadly, can I join too?
I'm 45 recently diagnosed with Ovarian cancer after a CT scan and ultrasound. I have a DH but no kids. Not sure what stage my cancer is at but I will be having an urgent operation for a radical hysterectomy and removal of any other surrounding tissues affected with the cancer. It's been a huge shock.

@twointhemorning a big welcome and a hand hold. It all seems to be happening quickly for you. X

@twointhemorning big shock indeed. What were your symptoms that led to the CT scan?

Thanks for the summaries, as a newbie it's hard to learn everyone's stories.

I'm late 30s and was waiting for biopsy results from a nail biopsy after a line appeared on my nail. I saw him this afternoon and I do have melanoma. It's not thick so hopefully one more surgery will be what I need. He said as standard it will go for a second opinion and then I'll be discussed in the MDT meeting and he will explain more then. But in shock but hopeful it's caught early.

Thanks @HumphreysCorner for the new thread.

I'm 60, found a lump during the first lockdown and diagnosed with HER2 pos and ER pos IDC breast cancer with node spread. I had FEC-T and HP chemo last year and just before it ended I broke my ankle which was pinned and plated. I have bounced back after surgery and radiotherapy having had a complete pathological response to treatment ie no cancer found at surgery. I am loving my physio and gym sessions. Now I am dealing with the sudden death of my DF and my DM being on her own while I am going for all the mop up herceptin and zolendronate infusions.
I had a scare with a swollen lymph node but the biopsies were all clear.
Today I heard one of my DC who lives abroad has had a relapse of a serious mental illness. I am on the wine and crisps tonight and am feeling "sod it all, what more can fate chuck at me!" I am going to go down to my boat and chill out this weekend and look after myself. I am feeling strangely cheerful now. It can't get worse at least!

@twointhemorning welcome to the thread nobody wants to be on. How's your DH taking it? Is he supportive?

@sunflowerdaisies the waiting is horrible. Once you know the plan you will feel better.

Best wishes to all. The weather looks decent for a Bank Holiday so let's make the most of it!
Top

Back from hospital. Last of the EC done and just waiting for the nausea to strike. Thank you for the info on carbo /paclitaxal. I'm hoping it'll be better than the Red Devil.

So my story. 41. Single mum to a 6 year old DS. Stage three triple negative breast cancer. First mri next Wednesday to see how the treatment is going. Anxiety about that is already high but I'm just keeping it all crossed for good news.

Hello and love to you all and welcome to the newer members. I'm sorry you find yourself here and if i can ever help with anything just shout. My areas of expertise are embarrassing side effects and dog training.

Hello to everyone on this new thread. I'm in the middle of a 2wk self-isolation period prior to a mastectomy for HER2+ ER+ PR+ breast cancer, having already had FEC-T chemo. Expecting to have rads after the mastectomy and then a DIEP reconstruction later on.

I've tried to do some extremely light gardening during this self-isolation but have needed rest days in between as I'm aching so much, presumably still in chemo recovery. Trying to get back to healthier eating but my body still thinks it's on steroids as I'm so hungry! I suppose it could be my body wanting to repair itself after chemo but why can't it use up my copius fat stores first?!

@Acinonyx2 my symptoms were presenting as IBS types of things: bloating, diarrhoea, constipation, stomach pain. GP did full bloods, and stool samples everything came back negative but was still waiting for the CA125 results. The GP referred me for an abdominal ultrasound which wasn't flagged as urgent. I was in a lot of pain one night so called 111. The doctor was concerned and wanted me to go straight to A&E. I had a few hours wait to see the doctor who when examined me could feel something. I then got sent for a CT scan and I was told they had found a mass on my ovaries. I then got sent straight up to the Gynae ward and was told I had Ovarian cancer and my case would be discussed at the next multidisciplinary team meeting.

Hello all and welcome to new thread. Sorry to the new folks that your find yourself here, although you will find some wonderful support here.

I'm 41, married with two kids 7 and nearly 5. Got diagnosed with aggressive primary mediastinal B cell lymphoma in February. Was meant to be v hopeful prognosis, 6 very strong chemos and into probable remission but I've just relapsed 3/4 of the way through the chemo course, so as of last week my treatment has all been massively adjusted and I'm now looking at a stem cell transplant as best case scenario, and basically terrified about what that means. Trying to come to terms with the idea of probably a month in hospital in complete isolation with no visitors experiencing very severe side effects from the transplant.

Phanny I am a bit worried about my dog. He seems a bit depressed. He picks up on moods very easily and has been missing me while I'm in hospital, and also gets very wobbly and worried when DH (who is very patient) is at the end of his rope and stressed. I feel like I need to instigate some sort of dog cheering up programme, poor thing.

@Babamamananarama my dogs feed off my moods too. My youngest has become very protective of me lying at my feet. What does your Ddog like to do? Do you use stuffed kongs as a treat? Or maybe get a snuggle mat or training games?

Snuffle mat. Not snuggle. Although that sounds nice too

Phanny he's a really undemanding dog and that's part of the problem. We rescued him just before Xmas, he slotted really well into family life and then I got ill and so haven't been able to put in the hours. I've signed up to one of the Absolute Dogs programmes for some training ideas to try to inject some fun into his life. We do have a Kong, I'll dig it out. Today I managed with the help of my dad to take him to the beach for a good yomp, and then he spent the whole afternoon curled up on the sofa with me - he is taking his care role very seriously. Poor DH is having to mostly behave like a single parent as I've been so ill and in hospital such a lot, so he just doesn't have the headspace to add in much in terms of dog enrichment, and it's difficult for me as I'm immuno-compromised so shouldn't really be dealing with dog foods or poo, and am also frequently unable to walk him due to fatigue and breathlessness. I'm trying to think of training games I can play from the sofa!

@twointhemorning welcome to our lovely thread, a CNS told me recently that most cases of OC present as vague IBS symptoms. Mine was an incidental finding - I was having a CT scan to check my spleen and liver for a suspected blood cancer (which turned out to be negative) and that's how my ovary problems were picked up. Have you been told if you will need chemo as well as surgery?

@sunflowerdaisies welcome to you too, hope you hear something soon, the waiting for a treatment plan is the worst time.

Hello. I'm back from my 3rd surgery and recovering at home. Feel a lot like I've been hit by a truck.

I have 2 children age 8 & 4. I have breast cancer and I'm waiting to find out what stage it is. I have an amazingly supportive DH and a busy full time job.

Sending love to everyone.

@FizzyOrange yes I will need chemo. They want ideally to do surgery first and then 6 rounds of chemo. If they can't proceed with surgery they will do 3 rounds of chemo, then surgery and a further 3 rounds of chemo.

The surgery will be a major operation up to 10 hours - a radical hysterectomy and removal of any cancer from surrounding organs such as the bowel.

I'm really scared, but just trying to take everything step by step. Last week I had 6 litres of fluid drained from my abdomen. So feel more comfortable, but it's filling back up.

Hi all, back again! I ended up having a mini emotional meltdown on Wednesday morning as that was the day I was supposed to see my consultant, but the appointment was delayed til Wed 2nd June. I know it is only more one week, but I ended up crying on the phone to his secretary and she was so lovely (I felt like a right muppet!) so my consultant phoned me back a couple of hours later. He confirmed I do have lymphoma (lymphoplasmacytic lymphoma) based on my bone marrow biopsy, so I weirdly feel a tiny bit better now that I know. I still have the appointment next Wed to find out next steps (which is likely to be “watch and wait” but he won’t know for definite til I get my CT scan) - yes I am still waiting on a CT scan, but I am apparently high priority.

Waving hello to the new people! Sorry you are joining us but I hope the sun shines for you all this weekend. Sending feel good vibes to those undergoing treatment 💐