Cancer support thread # 75 - come on in!

[Bloodybridget]

This is the new thread for anyone at any stage of cancer, from noticing a possibly warning sign, through tests and scans, diagnosis, treatment and beyond. Come on in for advice, sympathy and support.
The last thread is here.

If you've been on a previous thread, please come and say hello and introduce yourself!

If you are a relative or friend of someone with cancer and looking for support, there are other threads on this topic - this one is for cancer patients ourselves.

@Starmer

I had adjuvant chemo after surgery for colon cancer. Mine was in the transverse section so didn't need a colostomy. Do you know what sort you will be having? Mine was oral, just tablets, capecitabine. It's not as brutal as for ovarian or breast. You don't lose your hair, but it is cumulative and I didn't seem to feel any better on my week-off. Just v tired and achey. You do need to moisturise hands and feet, because neuropathy seems to be the main side-effect.

How are you getting on with your stoma? Hope your recovery is going well and family are coping with the news.

Thank you all for the welcome (I think).

@romola yes to memes!

@balkanscot I hope your appointment went ok - my D Day is Wednesday. Am strangely calm at the moment.

@gillmoregirl Thanks!

@ElaineMarieBenes sending all the positive vibes for your D-Day on Wednesday. I felt strangely calm last night and in the waiting room waiting but in the examination room and during ultrasound & biopsy the nurses had to hold my hand as I was sobbing uncontrollably.

That’s biopsy done, it’s a waiting game now. The consultant said “I don’t think it’s anything nasty” before he sent me down for the ultrasound. The ultrasound doctor said it needs a biopsy as it looks like the lump is in the lymph nodes and not in the breast (well, it wouldn’t be as I have no breast tissue left anymore) and it’s all a bit of a mystery as all my previous lymph nodes from 2016-2017 results came back negative. Then she said “it’s still treatable” which freaked me out no end! She then did a quick ultrasound of my neck, all well there.

Back to the consultant with the ultrasound results and his exact words were “Most odd” and that it could be anything but that it is unlikely to be breast cancer again. Biopsy done (during which he said “It’s nice and soft” which reassured me, perhaps falsely, that it’s not as bad as it seems (malign rumours are more solid, or so I thought), he managed to burst one of my blood vessels with a needle, so had to spend an extra 30 mins. waiting to make sure it has stopped bleeding.

Appt. for the results next Tuesday, although he said if he hears anything beforehand that he’ll give me a ring.

Feelings veering from “It’s going to be OK” to “It’s lymph node cancer and it’s terminal”

@balkanscot ok, sounds hopeful, but of course you will be on tenterhooks until Tuesday. @ElaineMarieBenes will be thinking of you on Wednesday. @Lizdeflores, during chemo sessions I was often very dozy because of the premed antihistamines, when not asleep I would play Scrabble on my phone, read a newspaper or a book. At home, I spent a fair amount of time doing jigsaw puzzles and putting together Lego kits!

I haven’t posted on this thread but was active on the previous one . 68 years old , fit and active , history of lumpy boobs , never a problem .
Routine Mammogram a year ago showed area of concern ... DCIS diagnosed after biopsy . 2 lumpectomies failed to get clear margin Altho
Lymph nodes clear .
Booked for mastectomy in November but pulled as found to be HER2+ . So 12 sessions of Paclitaxel ending in February.
Mastectomy with DIEP reconstruction booked for mid March but reconstruction not done because of Covid-19 . Skin expander put in .

So here I am a year on from that mammogram.
Very uncomfortable with implant/ skin expander and having a mammogram tomorrow and , honestly , bricking it !
I have been upbeat all the way through but if anything is not 100% tomorrow I don’t think I will cope .

I know no one can help . DH has been fab but I know he is scared for me

I have been brutally independent all the way through including flying off island alone for the mastectomy and returning in wheelchair with chest drain to self isolate for two weeks at home .
It’s a measure of how scared I am by the fact he is taking me tomorrow .

So I am going to get out of my pit of despair , make a cuppa and treat myself to my last sleeping pill .
Maybe writing this all down will clear it from my brain .
Night night all .

Good luck for tomorrow Trumpton, the year has flown!

We are on our way .
It’s today.
Had a nasty little spat with DH just after I posted last night about the way he talked to me when I was having trouble finding the right word for iPad charger .
So that didn’t help my sleep !
He has apologised and we are now on our way after me telling him he couldn’t come !

Hey ho I never was a saint !

I havent been around for a while but during most of 2019 I found these threads to be a lifesaver.

Summary: I found a lump which turned out to be Stage 2 breast cancer Removed with clear margins, no lymph nodes involved. ER+ and HER2+ Chemo, Rads, and Herceptin which got stopped before the end of the course because of Covid. I am due to go back in September t see the oncologist and the surgeon when they will decide about resuming the Zolodronic Acid infusions. There were two more due at six monthly intervals when it all stopped. Was started on Anastrazole but it was causing problems with my joints so now on Tamoxifen which seems to suit me better.

To those here waiting for results and answers I remember just how hard that time is and no doubt delays caused by the virus are not helping at all. I hope you all get the answers that you want. Meanwhile, if my experience is anything tom go by, you will find this thread helpful and supportive.

Trumpton. I hope today goes well.

Thank you for the positive thoughts and sending them back to everyone.

Consultant rang and asked me to come in today as she had all the results. Well I have grade 2 invasive ductal carcinoma (apparently this is U.K. NHS grading - though I’m far from home! and no NHS here!). ER positive, HER -2+ equivocal (?). Positive result in the axillary lymph node (great!).

I am waiting for the insurance company to agree to the surgery (has been v quick so far). I have some other tests next week (including for Covid - as required here 72 hours before surgery). I am going to have a bi-lateral mastectomy plus left side lymph node removal. Then will find what the next load of test results lead to!

The most shocking thing I have found out today is I most likely do have the BRCA2 gene mutation (awaiting the genetic test). Unknown to me my Aunt tested positive and went around the whole family with details on how to get the test. I had moved away and my mother decided not to tell me. Several of my cousins it turns out have already elected to have preventative mastectomies and I didn’t even know I was at risk. Mommie dearest (who was a breast cancer specialist radiographer) always told me I was very low risk! On the positive side it was great to speak to my Aunt today and I have promised to ring her frequently! It was good to speak directly to someone who has been through this (17 years post BC - she also had her ovaries removed in the last 5 years - which is something my doctor here suggests I should consider if the gene test comes back positive).

Going to lie down in darkened room now - exhausting but I have to work tomorrow!

@meercat23 yes I am finding this thread very helpful - not sure I fully understand all the language yet!

Thank you for being so welcoming, and sorry for posting and then running. I think my head was all of a spin.

I hope that today went well, @Trumpton and that you are managing the wait @balkanscot. And I can't quite imagine how you are feeling @ElaineMarieBenes - you sound pretty calm, whereas I think I would be throttling my mother.....

I see the oncologist tomorrow to discuss chemo. Off on holiday in a week and a bit, so I guess it will start after that. Thank you for your message @Thymeout - I hadn't considered it might be oral, and that feels very appealing at the moment after the number of canulas and lines I had in hospital! Stoma ok ....... we are getting used to eachother.

Just catching up -
@Trumpton I hope your mammogram went OK yesterday, I guess you have to wait for results? You don't have to go to the mainland for that, do you?
@ElaineMarieBenes I'm very sorry about the diagnosis, and the likelihood of gene mutation. It's pretty shocking that you weren't put in the picture earlier. I hope the insurance company behave as they should - if not, would you come back to the UK for surgery?
@InOtterNews I was thinking of you, have you had results from the PET scan? Hope you are not too flattened by treatment again.
@meercat23 nice to see you! Hope life is treating you kindly enough, cancer treatment aside . .
@Starmer hope your discussion today feels OK, and that the consultant is sympathetic if you're feeling wobbly. Also that they're fine with you having your holiday before starting chemo. In my experience, once you start, it's best not to count on being able to do anything!
Waving at everyone else. I just got a date for a CT scan at the end of the month, glad I didn't have to chase them for it.

Hi @Bloodybridget no official results yet but my clinical nurse indicated positive news. I've got a call on Friday with my consultant to the full report.

I had my 5th chemo last week (final session of RCHOP, one more of the awful cytarabine to go still). Following the 4th chemo, then the sepsis this one has completely floored me when previously it's been ok. I just about have the energy to get dressed at the moment and the lingering effects of sepsis are still hanging around.

I've also had my appointment through for next week to meet with the bone marrow transplant team - so this shit is getting real. Lots of questions - mainly will I have to really spend up to 12 weeks in hospital following transplant and what is the food like .

My anxiety levels have gone through the roof - it's partly fear of what's to come/will I recover to resume life, partly being fed up with feeling so unwell, and some exhaustion for good measure. I just can't shake this feeling of fear at the moment.

Blimey, Otter, that's enough to put anyone in a state of fear. Do you know how long after finishing chemo you might be waiting for the transplant? It would of course be especially crap to be in hospital for weeks with no visitors. So sorry you are feeling so poorly, it is depressing, for sure. Sending very good wishes and sympathy.

Hi all I'm very new here so please bare with me. I'm just after a hand hold really and to hear from anyone experiencing similar. A cpl of wks ago getting changed I noticed left breast had small indent in underside esp so when I take a deep breath in or raise my arm. Anyway went into immediate panic (health anxiety is the worst) made an appointment with gp who said they couldn't feel anything of concern and thinks is related to scar tissue from biopsy I had last yr which turned out to be a fibroadenoma. Anyway sorry for the ramble in my first post fast forward almost 2 weeks I got an appointment at breast clinic today for early next wk. Dont know what I hoped from this post just so nice to get it off my chest (no pun) and also say hi in meantime to u all

@Starmer - DH is pretty cross and I think it’s best we are far away - he wasn’t as polite as you! Have a great holiday - I had a few days away just before diagnosis - it was fabulous!

@Bloodybridget - surgery expected to take place in the next 10 days at the latest (if I came back to the U.K. would have to quarantine for 14 days before I could even see someone). I really like my surgeon here - she’s very experienced! My Aunt also told me I’m better off here as treatment for cancer has been affected in the U.K.?

@MackemLass79 - fingers crossed for you (If it helps from the get go I was told mine was suspicious and you’ve been told the opposite)

@ElaineMarieBenes thankyou that was what my gp said I've had no tests or anything yet so I'm just hoping she is correct tho my health anxiety wont let me think that she likely is

Mackemlass I had no feelable lump my consultant christened me no lump. He challenged all the SHOs to find the lump. I remember how I felt the panic and white noise I heard nothing anyone said to me until the day I found out I had breast cancer so of a hand hold is what you need these ladies are great at making you feel better xx
Hi ladies its been a few weeks I'm half way through chemo now I swap to abraxane this week i hope its not pink lol

Mammogram went fine . The radiographer was lovely as I dissolved into snotty tears at the thought of it .
So now we wait ...
I saw my breast consultant today and she thinks the pain in the breast with the skin expander is scar tissue and muscle pain . Suggested ibuprofen for 24 hours then a good dollop of voltarol all over the affected area .
She would also like me to see the physio team for deep massage under the arm to break up scar tissue around lymphatic nodes .
She did look to see if mammogram results were in but , as we thought , too soon . She said to ring breast nurse early next week .

I just hope that I am at the beginning of the end of this and not at the start of another .

Thankyou what were your symptoms if u dont mind me asking? Tell me to mind my own at any point I honestly dont offend ha

@ElaineMarieBenes good news re: surgery happening soon. Sorry to hear that you are also BRCA2 +. It’s just utterly crap, isn’t it? I remember thinking I could have lead super healthy lifestyle and it wouldn’t matter not a jot because of the gene - that took some time for me to come to terms with, this doomed inevitability and a feeling of being “damaged goods”, for lack of a better word. I found out I was positive 24 hours before my lumpectomy which totally changed my treatment plan (originally it was to be lumpectomy followed by radiation sessions) - now I was looking at lumpectomy, double mastectomy and oophorectomy. It all felt absolutely.... unreal!
I also foolishly believed that you can only inherit the gene via maternal line. Ha, bloody ha, just shows you how naive I was (it was my dad’s side of the family that sealed my fate: him, his sister, their mother and his brother’s daughter all developed BC).

@Trumpton sending you lots of positive thoughts for a good outcome.

@meercat23 - I know what you mean re: joints - I am on Letrozole 2.5 mg and the joint stiffness/pain is incredible at times! Sadly, because of my oophorectomy I had to switch from Tamoxifen which was a walk in the park compared to the wretched Letrozole.

@Starmer enjoy your holiday next week!

@InOtterNews - fingers crossed that all the plans are in place for your bone marrow transplant and that you get all the answers to your questions. I hope you sepsis exhaustion eases off soon.

@MackemLass79 - I know how terrifying it seems when you have to wait. Sending you positive vibes throughout. Let us know how you get on.

@Lurkeycakewoman - how are you finding the chemo?

@Bloodybridget - thank you for the welcome! Great news re: CT scan at the end of the month. I am glad things are progressing re: cancer checkups & treatments, a nurse told me on Monday how quiet they have been at the Breast Clinic lately which reassured me quite a bit - I was panicking I would be cast aside due to Covid! I hugely appreciate everyone’s kind and supportive words.

I got myself into a bit of a panic today thinking that if the consultant doesn’t phone me before my appt. next Tuesday that this means bad news. Hm.

Hi all. Glad to have found this group. New diagnosis SCC tongue today...non smoking 41 year old with 2 young kids now facing big hideous op...still numb I think, not cried yet just feeling I have to face the new future as bravely as I can.

I'm not too bad it hasn't made me sick the heartburn kills me my GP suggested gaviscon that would make me sick lol
I'm exhausted all the time and a bit achey and shaky if I stand up for too long.
They class me as tolerating it very well because I've not had too many of the bad side effects. I'm blad and can't stand anything on my head not any hats or scarves I'm glad I didn't opt for a wig.
Time is going so fast. I've got used to the picc line I suppose but I can't wait for the day its took out. They weren't able to draw back blood from it yesterday so had to have a proper blood test and then a covid test after

Oh, @zzhalk5, I am sorry to hear your news. When are you likely to have surgery? I know what you mean about crying - I feel rather matter of fact now, whereas DH is wobbly.

I have seen the oncologist, can go on holiday (hurrah!), and then start 6 months of oral chemo followed by 3 further months of shielding. Slightly daunted by the timescale, but more the prospect of keeping things as normal as possible for 4 children, especially as DH works long hours and I do much of the ferrying about.

Hello everyone! Sorry been a bit rubbish at doing anything...chemo and radiotherapy took it out of me. Then I had allergic reaction to Tamoxifen, swelling mouth etc, not fun.
Actually feeling a little perkier now, just waiting on next steps and bone scans because of possible mets (hoping not)
Sorry to see more people at the best club you never want to join, but hey if you want support, honesty and some amazing kick ass warriors you're in the right place.
Was nice to catch up with Trumpton after our meetings. Hope everyone is holding up!