Cancer Support Thread #71 - here to help if you’re dealing with cancer in any shape or form, come in and say hello.

[Brassica]

Hi again everyone and welcome to the 71st new thread for cancer support.

All those who are currently being treated, have been treated in the past, have worries and concerns and/or are having tests are very welcome to pull up a chair and chat, vent, rant, pour hearts out, share milestones and anything else! We are a very friendly and all-too experienced bunch on here and there are no questions too small or silly to ask.

Our previous thread is here .

Anyone with any type of cancer (female or male) is welcome. And we will hold your hand if you're waiting to find out whether or not you have cancer at all.

If you've got a loved one with cancer then your best place for support is probably on the Life-Limiting Illness board.

Please can I invite current members to reintroduce yourselves below for latest situations and stories so far.

[Bloodybridget]

I hope Purpleunicorn's funeral is just right for her family and friends.
I had post surgery follow up appointment today, saw the surgeon who led the operation. He was lovely, so kind. It's carcinosarcoma (ovarian), stage 2, grade 3 as it's a rare and aggressive cancer. Have an appointment at Barts with a medical oncologist tomorrow.
I do feel a bit knocked for six because I was sure it was going to be very low grade and stage. And he talked about chemo delaying recurrence. But we have a friend diagnosed 12 years ago with no recurrence, so I need to stay optimistic.
Sympathy to everyone here who's having a hard time.

[Brassica]

Really sorry to hear it wasn’t better news Bridget, that sounds worrying. Was he able to say if they were happy it was all removed with the operation or is that a subject for the onc tomorrow? Good that you’re having the next appointment so quickly.

[Bloodybridget]

Hi Brassica, he said the operation was completely successful in that they were able to remove everything they could see that was cancerous. The chemo, as I understand, is just in case there are cancer traces in other tissues (I don't have all the vocabulary yet!). Yes it is really good to be seeing the oncologist tomorrow!

[Thymeout]

Bridget I think that stage 2 would be classed as as low stage. It's quite rare. Stage 1 tends to be discovered by accident while investigating something unrelated. Most are Stage 3 on diagnosis. So they often lump Stage 1 and Stage 2 together for research purposes.

And a complete debulking is good news. Sometimes they can't remove all the cancer without compromising other organs. Sorry I don't know anything about carcinosarcoma, but it sounds as if you'll be seeing a TopDoc in the field, if the London is transferring you to Bart's for the consultation tomorrow. They'd otherwise do it in house.

Hope they're as lovely as the one you saw today.

[Bloodybridget]

Ah thanks Thymeout, as far as I'd understood the cancer was detected accidentally, investigation was triggered by a CT scan for a suspected kidney stone showing something abnormal in my pelvis. So I was expecting stage 1 - obviously unrealistic! But it is still, of course, quite good news, and the fact that the surgery was so successful.
The nurse specialist I saw today will be at Barts tomorrow and said the oncologist is great, very nice and friendly, and eminent in research etc.

[iVampire]

[iVampire]

That was for purple

The London and Bart’s are in the same Trust (the peculiar London re-org of the Thatcher year’s seemed to put all the old rivals into the same trusts!) so - assuming they’re like all other London link ups - staff will often work at either/both as the overall service is same management even when the teams split over sites.

But I do hope that it is indeed a Top Dog

[LondonHuffyPuffy]

Thanks for the new thread, Brassica. Hello everyone. By way of introduction - I am 47, married with a DSS. I was diagnosed with stage 4 Inflammatory Breast Cancer in Nov 2018. Er+ and Pr+. Mets in liver, lymph nodes, spine and ribs. I had 4 rounds of chemo in January and February (EC) which reduced the breast mass and liver mets by about 50% and appeared to have largely zapped the mets in my lymph nodes, ribs and spine. The oncology team were quite surprised by my response to the chemo. I cold capped (which was dreadful) and kept most of my hair.

I then had 15 sessions of radiotherapy. Now on ribociclib, letrozole and zoladex. I am also having Zometa injections. I am not a candidate for surgery. I drink too much 🍷 and have failed to give up smoking.

[SnowsInWater]

for purple.

Sorry the news wasn't what you were hoping for Bridget but it sounds like they are being proactive with your treatment.

Hi from a fellow IBC person London. Not too many of us around! I was fortunate in that mine was picked up at Stage 3 so am just finishing Chemo before a (hopefully double) mastectomy. It shows how much my sense of normal has changed when I define lucky as getting both my boobs cut off!!!!

[TwitterQueen1]

AimlesslyPurposeful (Amanda) was also very sadly laid to rest yesterday. She had an aggressive appendix cancer.

[peapod66]

Thank you for passing this on TQ.

Remembering purple (Becky) and aimlessly (Amanda). . Also thinking of their families today.

[gib1973]

Thinking of Purple and Aimlessly - hope that the are enjoying cake with Leslie.

I have my operation tomorrow. Lumpectomy alongside lymph node removal. I hope that this goes okay

[meercat23]

Gib. Very best wishes for tomorrow.

[BenWillbondsPants]

I'm so sorry to hear about Purple (Becky) and Aimlessly (Amanda).

[BenWillbondsPants]

I had a 5 day stay in hosptial week before last with neutropenic sepsis, so that was fun. Bloods all back to normal now thank goodness.

Had PICC fitted today which feels a bit uncomfortable just now but I'm sure it will be a lot better than cannulas at every chemo. The veins in my hand are shot now anyway.

Can anyone tell me if I should wear picc cover to bed? The nurse said to take it off in the evening as it's not good to have pressure on it all the time, but I'm worried about catching it in bed at night.

[Tahitiitsamagicalplace]

Thanks for the new thread.
I've not been around much in the past couple of months. I've not really known what to say, especially after we've lost a few much loved lacies.
Anyway, my intro: I'm 35 and was diagnosed with Hodgkin's lymphoma in October last year. I've had 2 cycles of ABVD and 4 cycles of escalated BEACOP-DAC. I've spent more time in hospital this year than at home, with various chemo related illnesses. I am now just awaiting my results of my "end of treatment" PET scan to see if it worked. I haven't had a negative PET yet unfortunately, so I'm really nervous.
I have two dcs (14 and 5), a dog and a dh.

[EmperorBallpitine]

Not been on for a while. Sorry to hear about lovely Purple and the others.
Was on here last year under diff name when I was having diagnoses/surgery for lung tumour. Was hoping the meds had seen it off but I'm back on the wagon now. PET scan yesterday, biopsy soon. I cannot express how little I am looking forward to my lung biopsy.

[Tahitiitsamagicalplace]

Ben I wore a picc cover, or when I didn't, I was wearing a long sleeved top all the time, just to stop it catching. Make sure your picc cover isn't tight.

[meercat23]

Just about to leave for my last weekly Paclitaxel session, also the last cold cap. Will be so glad to see the back of the hat of doom. It has worked so far though and although I can feel that my hair has thinned there are no bald patches and I don't think anyone else would notice. Over the past two weeks the side effects have built up to the point that all I want to do is sleep and my hands and arms look like leather and are very sore with the photosensitivity. I have taken to wearing little black mittens which do help

On Monday I have the first planning meeting and CT scan for the Radiotherapy so more delights to come. Just 15 plus 3 sessions for that so hopefully that will be not too bad. Once that is over I hope life will start to feel a bit more normal with just the three weekly Herceptin and the six monthly Zoledronic Acid, I will also be on Anastrazole which I have read horrid things about! Does anyone know whether thats starts while the Herceptin sessions are still happening or do they wait until you have finished those?

[BenWillbondsPants]

Thanks @Tahitiitsamagicalplace, I actually cut the top over an old pair of tights for last night in bed and it was fine. Quite loose so didn't annoy me at all. The hospital gave me a tubigrip to put on it but it feels a bit tight so I'm going to cut a couple of slits in it to make it more comfortable until my picc cover arrives.

[Diaryofalways87]

I had an ultrasound scan this morning and looks like the tumour hasn't shrunk at all :( feels like these past 12 weeks of chemo have been a waste of time. I've just had my first cycle of FEC today so I'm hoping this will be more successful. So fed up being ill now. I'm 31, I should be enjoying life :( feeling very sorry for myself today!

[BenWillbondsPants]

You've every right to feel sorry for yourself @Diaryofalways87, what a crappy thing to happen. I hope that the FEC is more successful for you, it's so disheartening when something like this happens.

[meercat23]

Diary That is tough news but I hope the FEC will make a real difference and that you get better news really soon. No wonder you are feeling down, this disease is a horrible roller coaster that flings us about at each new stage. I hope you get an up stage very very soon.

[gib1973]

Had my operation today (lumpectomy with lymph nodes removal). Feeling sore but pretty good. Still got my boobs and they look the same size so thrilled about that. Sorry to hear your news Diary - I'm sure that FEC will blast it away....

[Diaryofalways87]

Thank you all. The side effects are definitely more extreme on FEC. I'm hoping that means it'll work better! Glad your lumpectomy went well @gib1973 and wish you a speedy recovery.