Cancer Support #70. Please post on this thread, not #69, If you have cancer or are undergoing tests for cancer. Rant, rave, scream, cry – whatever helps. Supportive lurkers for Leslie welcome on #69.

[TwitterQueen1]

Thread #69 is filling up with messages of support for one of our own who is very seriously ill. Leslie told me a few weeks ago that she didn’t want any such messages to get in the way of those who need support through their cancer treatment so we are starting a new thread just for those who do have cancer or who are having tests. Could we respectfully ask lurkers and supportive posters to confine their comments to thread #69? Thank you.

We normally start with a brief introduction to our cancers – I’ll kick off. Ovarian cancer dx March 2017. Now on third-line treatment with a trial providing targeted and chemo drugs taken orally.

Hello there - just back from appointment with gynae consultant, who was very brief and uncommunicative! And we had to wait an hour and three quarters to see her - I wish she'd just sent a letter! Anyway - I have a "suspicious" cyst on my left ovary, will have everything out, then chemo if malignant, otherwise not.

It felt like she was pretty sure it is cancer, but not her job to say. I'm just glad I have the appointment withn the surgeon tomorrow morning.

Well that's pretty good news in the scheme of things bridget. They can't say for sure just from the scans and they won't do a biopsy to confirm in case they 'release' any cancer cells into your body. So they'll be super careful taking it out and then they'll be able to confirm or not.

My friend was offered chemo, which she took - why wouldn't you? - and although it was a nuisance for 18 weeks she was OK. Went to chemo on her own, worked through it and has been cancer-free for 4 years. She did lose her hair but it came back pretty quickly.

Thanks TwitterQueen, yes it all seems reasonable, and what I was expecting.

Yes, Bridget, that does sound more reassuring than it could have been. I had cysts on the omentum which my local hospital said were suspicious but never heard anything more about them once I'd got to St Thomas'. I also had free fluid in my abdomen, which is what they biopsied. As TQ said, they don't disturb the cyst itself - unlike breast cancer. It was inconclusive - which I think means they couldn't see any malignant cells, but that didn't mean there weren't any in the ovary.

By everything out, does that mean a hysterectomy and the other ovary, or just the cyst and the ovary it's attached to?

Hello, so pleased to find your post as very new.
After routine mammogram end March and very quick biopsy I was diagnosed with ER PR negative and HER2 positive. After surgery late April they removed tumour and have told me that the 2 lymph nodes removed also had cells in them.
I start chemo for 6 months in about 2 weeks.
So encouraged by your posts and feeling very shocked.

Hello Maysong and welcome. We'll keep you company along the way. Feel free to ask any questions you may have.

Hello Maysong, I'm new here too. Wishing you successful treatment that isn't too gruelling.

Thymeout, the consultant today said they would remove uterus, ovaries, Fallopian tubes, cervix and omentum.

Should add, I am mid-60s, nearly 20 years post menopause, so obv I don't need any of those organs. In fact, I never have.

Hello again. This morning was much better, staff at Royal London really great, had a long meeting with one of the surgeons, then briefly met the head surgeon (they will do the op together), a also a Clinical Nurse Specialist, Macmillan support person, and another nurse who took bloods and will do pre-admission thing tomorrow. Have also had ECG.

Next Weds I have to go for high-risk anaesthesia assessment, then admission and surgery Friday 24th. Apparently I will be in at least 5 nights, it's a much bigger deal than I'd imagined.

The cyst on my ovary has grown 4 cm in 2 weeks . . .

They will tell me what they have done and found immediately after surgery, but I won't get all the analysed results for another 3 weeks, so won't know till then if anything malignant and if I have to have chemotherapy (you probably all know how this works already!).

The ward is on the 8th floor of a shiny new building, so I should get a view, anyway.

Anyway good news is that I can still go away to Ludlow for a couple of days with a very dear friend, this Thursday to Saturday. And with any luck can still fit in a two-week family holiday at the end of June.

I feel like atm I can be all brave and cheerful, but when it's hurting and I'm feeling crap I'll be a complete bitch. So hoping to bank enough goodwill now as Little Miss Sunshine.

It is a big operation bridget. I was down for 8 hours and spent 7 days in hospital. Don't underestimate the emotional and psychological effects of a GA either. No confidence, tearful etc - it was a huge thing. However, I did recover well - I made sure I went for very short walks every day to regain my strength.

I''m very surprised it will take 3 weeks to get the results back though...

V glad you're happy with your team, Bridget. Is there any reason why you need a high risk anaesthesia appointment?

I was 72, was told surgery would take 2 hrs and I'd be in for 4 nights, but was discharged after 3. My tumour was 22cm, but not attached to anything. Vertical incision, full de-bulking. Had follow-up appointment 2 weeks after surgery and got path results then. Had cab there and came home on my own, train and 2 buses. Just to give you an idea, but we're all different.

I felt surprisingly well post op. Pain not really an issue with otc drugs. Could do everything I needed to do, but got tired v quickly and there was a lot of resting. I never actually felt ill in myself, but it was months before I got my stamina back. Psychologically, of course, a lot will depend on your diagnosis. Fingers crossed. flowers

Sorry!

Thanks both! Thymeout I don't know any reason why I would be at high risk re anaesthetic, I just assumed it was because it's a long operation (TQ they said 6 - 8 hours to me).

I am expecting to feel all sorts of horrible, but for the moment I just want to enjoy feeling well, enjoy the trip with my friend and time with my DP, and believe that it will be ok eventually.

Hello again everyone, and welcome to Maysong - I’m a breast cancer patient too, albeit triple negative so slightly different diagnosis from you. I hope you are processing all this new information and new reality ok so far.

Bridget you bank away on the goodwill, but no one will compare your deposits against your withdrawals I am quite sure. It sounds as if you had a really productive meeting and glad you have confidence in the team. That op will doubtless be physically hardcore but let’s hope for a good set of results to come.

Thanks all for the kind and understanding words for me the other day. I had chemo #2 today and it went ok, cold capped and tolerated it fine again. The only downside is that I got home and washed the conditioner out of my hair, along with about another 60% of the hair itself. I have a fine tonsure now and a full bin. I was bracing myself and even so had a couple of intakes of breath at how big the handfuls were that came out.

It feels easier dealing with the huge loss today than with the initial loss on Saturday. I think now I feel like the game’s up, hair-wise, so I might as well move on. The fear of it has been realised and so you are where you are. I can’t pretend I like the look though! I’ve got one wig ready and another on order. I need to look up some scarf thing tricks I guess. Thanks for the recommendation to do the Look Good Feel Better class - they do them at Guy’s so I’ll look into it.

Hope everyone is ok otherwise.

Evening everyone. Very giddy today. I heard from Children with Cancer - they have offered me a charity place for London Marathon 2020. Nearly finished chemo so just surgery and rads to go then I can start training for the marathon. Got a spring in my step once more....

Yay - fantastic news!!

I’m in the ballot and have made overtures to a charity, but won’t know until October if I can get a place VLM

I'm in the ballot too - it will be my fifth time but no luck yet....

Ooh 2 runners! Purple you and I are banking up the virtual miles .
Well done iVamp and gib.

Brassica do you think you might feel better if you shave it off? It can be very empowering when you make the choice. Look Good Feel Better is fab! Fortunately I had someone to do it all for me - my hands shake too much to do it myself.

I think I might, TQ, if only for the reason that I’m leaving hairs on every surface and for a perfectionist like me I’m getting nothing else done except for picking them off so that should free up some time. Plus the Scargill look doesn’t have much going for it.

Welcome Maysong although it's rubbish that you need to be here lots of the ladies on here have breast cancer so they'll be able to answer any questions you have

Bridget I know it's worrying with the cyst growing so quickly but if it is malignant then they say that fast growing rumours react better to chemo as it sucks the chemo up quicker if that makes sense

Ooh good luck on your marathon Gib! You're running for me and TQ too, we'll be with you in spirit

Brassica you'll definitely feel better if you shave it off. There's nothing worse than seeing hair all over the place and it falling out in clumps. And it's so much cooler in this weather, I've done nothing but sweat since mines grown back and you won't need to shave your legs which is always a bonus

Brassica, thank you for the kind words re post-op bitchiness. And I'm really sorry about your hair, it must feel horrible. Hope if you go ahead and get a number one, you'll feel funky rather than scalped.
Gib crossing fingers you get a Marathon place, how exciting, and training will give you such a focus when you can start!
purpleunicorns thanks for reassurance. I have to say, after the pre-op assessment yesterday I'm more worried about ending up with a (possibly permanent) stoma than having (hopefully curable) cancer. Isn't that ridiculous? I never realised it was a possibility until it was mentioned on Tuesday, then yesterday we had a gruesome meeting with a loud, jolly stoma nurse . . I do have a good friend who has a permanent stoma post bowel cancer and she says it's all fine. And the nurse said it was a small chance for me.

Bridget I have a stoma and it's nowhere near as bad as you expect it's going to be. When they told me I needed one I was devastated but if I had the option now I don't think I'd have it reversed. It does take a couple of weeks to get used to it as it's a bit grim while it's healing but now I don't even think about it

Thanks again purple, gosh you lot are a brilliant support! I will share some good news too, which is that my (first) great-nephew was born at 7am today, right on his due date! Hoping to meet him before I go into hospital!

Bridget welcome to your great nephew. I am sure you will be a great aunt in all senses.

I must admit I winced when I read about the gruesome meeting with a jolly stoma nurse. I am sure she was just trying to be positive but there are times when what you really need is calm, empathetic and realistic, probably not jolly.

Brassica I am sorry to hear about your hair. From what I read keeping on with the cap can be worth it for some even when it falls as it seems to help with regrowth. In the end it probably depends on how you feel about coping with the cap and how easy that is realistically.

I have just had my first session of the second cycle of Paclitaxel and Herceptin. (I have only just realised it goes in cycles ) I am using the cap and so far I have seen less hair loss than after a heavy cold but I am bracing myself that this is likely to change at some point soon. I think I am a lot older than most of the lovely people here and I cant face being old, wrinkled and bald. No choice about the first two but I will fight to avoid the last one if I can. Never let anyone tell you that you can be too old to be vain

Wishing you all a lovely weekend

Well after tomorrow that is🙃