Cancer support thread #77 - newbies welcome

[InOtterNews]

I couldn't see new thread so here we go...

Welcome friends old and new, to the most supportive thread on Mumsnet. Everyone is welcome whatever stage you're at (fears, diagnosis, treatment). Introduce yourself and say Hi

Good luck to everyone having treatment this week. Hugs to all - especially if you're feeling rubbish (physically, mentally, or waiting for results - ugh)

@TopOfTheCliff Amazing news! So pleased for you. And great to hear from another HER2 lady with a positive outcome (did you do hormone therapy as well as the chemo?)

@LoveFall, I'm also Canadian! And yes, nothing like watching the dumpster fire south of the border to make you appreciate it.

Got my port yesterday! It was a long day, but I survived. The worst part was all the waiting beforehand, plus multiple attempts to get an IV going (it turns out that I have tiny veins - so, validation for getting the port!). The surgery itself was ok. I asked for as much sedation as they could give me, and it seemed to do the trick. The OR had ceiling panels with palm trees on them (for real: they were there before the drugs started!) and at one point they started swaying 😂 so I knew I was getting the good stuff. I was still able to talk with the surgeon and nurse throughout, and they were so, so lovely. Lots of banter and jokes (at one point we were discussing our shared loathing of Paw Patrol!), but also lots of really patient reassurances and plain decent kindness.

The wait after was a bit tedious again, and the daycare nurses were more efficient and less chatty, but by that stage I was so zonked and relieved that it didn't matter! It's great to be home, even though I'm pretty sore and still finding moving about uncomfortable. Thank goodness for Tylenol and Netflix! I'm a bit freaked out to change the dressing (I was told to do this after two days) but will face up to that tomorrow... 😱

Thank you again to all who shared their positive port stories - I was clinging to these the whole time.

Thank you for the warm welcome. 😊

Topofthecliff - I’m kind of in the same situation but my tumor definitely was cancerous and I’m staged at 1a. It means the cells were only in the ovary and there was no spread detected anywhere also during surgery.

I had my uterus, Fallopian tubes, ovaries, cervix, appendix, lymph nodes and my 6 month old baby sized cyst removed but that was all done as part of the initial staging laparotomy so there was no need for the drs to go back in again once the results were known. However, if there had been I’d not hesitate to have everything that I could live without removed. There’s just something about knowing you’ve had ovarian cancer yet you’ve not needed chemo that is very difficult to understand. I too have a low chance of re-occurrence but right now it’s not really a comfort.

I hope you find a good way forward for yourself. 😊

I’m sorry, my reply was meant for Lovefall.

Just listening to the Boris update and they said about delaying cancer care due to Covid. Was hoping to start chemo next week not in 3 weeks.

@HumphreysCorner ah I missed that, did he say something specific about cancer treatment? I'm wondering if they might extend my chemo or something to avoid too long a gap til my op but maybe that's a bad idea given the toxicity! Ugh.

@Anne1958 I think that's an entirely understandable way to feel. I know this is a cliche but hopefully over time it'll get easier. I can totally imagine that while it might be a good not to need chemo it could be really unnerving xx

Anne1958, thank you so much for your post. I hope you have recovered from that surgery and are feeling well.

I am still a bit shell-shocked after the call from the doctor. I barely slept last night, but that was partly my little "granddog" who we are caring for. He was all over the place wanting cuddles etc. Maybe he knows? DH is threatening to ban him from our bed.

I feel a bit like you in thinking about not having everything out will leave me constantly worried. I had a horrible infection after my surgery in December that meant 5 days in hospital. It was kind of traumatic really so I feel very scared of surgery at the moment, although I know the infection was some sort of fluke. I don't think I have really processed the whole infection thing as I am tearing up writing about it.

I was in a five bed room and was terrified of covid, not to mention the infection. The noise at night was unreal, so sleep was almost impossible. I burned through 3 audiobooks.

I am not looking forward to seeing an oncologist. Weirdly I am scared they will be too gung ho given the rarity of my tumour. The doctor last night couldn't resist telling me how interesting my case has turned out!

I told her it might be interesting to them but not so much for me. It seems from what I have read that they don't really know what treatment is best it is so rare.

Enough of my stream of consciousness. I hope to be more focused soon and be able to concentrate snd support everyone here.

@Shrillharridan I’ve just realised I have what you have! I get screened for glaucoma annually and my optician likes to CT scan my eyeball and photograph the retina every year for £36 extra. He found a freckle on my retina 5 years ago and monitored it in case it was a melanoma but it’s just a choroidal naevus. It is benign but we check it every year just in case. Nothing worrying and most people don’t know they have them. I hope that is a comfort.

Ooh! Nevus twins! :)
I also have a sub retinal fluid leak and - possibly - a condition called AVMD but he's getting a 2nd opinion on that....so the nevus might be an incidental finding...who knows!??

@LoveFall
6 years ago, I had a Mucinous Borderline Tumour - not nearly as rare as yours. It extended as far as a full term pregnancy, was taking up most of my abdomen and weighed over 2 kilos. I had the usual debulking - hysterectomy, Fallopian tubes, ovaries, omentum and was told I was Borderlines are 'cured by surgery' and I have a more chance of being hit by a meteorite or run over by a London bus as any further problems. But I would be monitored for 5 years with scans and bloods, just in case. I was told all this by a top gynaeoncological surgeon at St Thomas' in London. 'Only a small percentage recur and only a small percentage of that percentage will have turned into cancer'.

It used to be very controversial as to whether Borderlines should be classified as cancer or not. They used to be called tumours of Low Malignant Potential and then the WHO pronounced and said Not Cancer, because they're not invasive, just sit on top of an organ and grow v-e-r-y slowly and hardly anyone dies of them.

They grow so slowly that chemo kills off your good cells long before if affects Borderline cells and ends up by killing more patients than it cures.

All the UK NHS/Charity websites (except Ovacome) have followed the WHO advice, but you do occasionally come across a doctor - particularly Ob-Gyn, who doesn't have any advanced oncological qualifications and is still going by what they learned at Med School 30 years ago. My local hospital is a case in point, but fortunately they refer to St Thomas'.

I don't know if Brenner Borderlines behave differently. It's good that you're seeing a gynaeoncologist. You could ask what they would call it and about management going forward.

I know it's only a word, but the treatment and outlook for Borderlines is entirely different - and it matters v much to me, and probably you?, whether they call it cancer or not.

If you want to learn more, MDAnderson in Houston seems to be the authority on Borderlines in general. I don't think the sample of recorded Brenner Borderlines is really big enough to draw any conclusions as yet.

I hope you don't think I'm dissing your Canadian hospital. My cousin lives in Toronto and I'm v envious of their routine colon cancer screening for the over-60's(?) Wish we had it here.

Should have said Congratulations @TopOfTheCliff. Ring that bell!

Thymeout, thanks so much for all of that. It was an ob/gyn who did my surgery, but pathologist who called it borderline Brenner. I am going to see an oncologist.

Your story is very helpful. I really don't want to go crazy with over treatment that could make things worse or cause me more pain etc. I am just adjusting. They did say stage 1 but obviously they can't fully stage without more extensive surgery. I only had both ovaries and fallopian tubes out.

I don't feel you were criticizing my Canadian hospital at all! I have confidence in my doctors so far. Maybe not so much the hospital ward I was on but it is Covid time etc. and everyone is under pressure. I can't fault the care, just the overcrowding etc. it is a large teaching hospital and I met lots of female ob/gyn residents who were great. (I am not saying a man wouldn't be but all of them were women, which is inspiring.)

Thanks again for the time you took to reply.

Huge, huge congratulations @TopOfTheCliff! That is wonderful news! 🍾

Thanks for the good wishes, @Bloodybridget. It's amazing the way you check in with everyone - so kind when you have so much going on yourself. This thread is so comforting and lovely.

I had my second chemo on New Year's Eve and it has hit me fairly hard - I have felt incredibly exhausted and consequently quite down. I think I am struggling to accept that I can't do stuff - DH says I keep trying to do more than I should and then wear myself out. But how do I know what is "too much"? I am worried that I am using chemo as an excuse to languish. I think it's not helped that I have been trying to homeschool DS this week which doesn't suit either of us well, so I have felt more than usually stressed.

Hope everyone else in the UK (obvs different criteria for different countries) is coping ok with the new lockdown and its implications. xx

"I am worried that I am using chemo as an excuse to languish." @AlbertCampion I hear you. Feeling that way a bit myself right now recovering from the port insertion. Not so sore now, but very stiff. Second chemo on Monday, so I'm also preparing to feel grim next week. I really want to keep active and not be bed-ridden by this - it's hard to find a balance between healthy rest and what's good for morale, isn't it? We're also into virtual school here in Canada until at least the end of the month, though our toddler can still be at nursery. The one consolation with online learning I suppose is there's less chance of infection being brought home - I've become much more scared of Covid since the cancer diagnosis - but it's certainly not stress-free...

From one BC positive to another I’m so pleased to hear your news @TopOfTheCliff. Great start to 2021 and long may it continue!

Can I ask if you are having any other treatment (herceptin/tamoxifen)?

Also agree Bloody Amazing Bridget!

Hope everyone else has a peaceful weekend.

@LoveFall I quite understand your confusion and anxiety re diagnosis and treatment plan, I hope ThymeOut's very well-informed post has reassured you - @Thymeout you are so thoughtful and helpful with your comments and advice.
@Lubballoo, @FizzyOrange and @Lizdeflores I really hope no delays for any treatment - I am slightly worried about this too, can't believe they would pause chemo once a round has started but we are in such desperate times. It's awful to hear of planned cancer surgery being delayed. Fizzy v glad to hear you had a good experience with staff at the hospital, and that the snotty email had the desired effect!
@MollyButton may your easy recovery continue, and that's great that your new GP practice seems to be good.
@backformore getting the port in is a big hurdle to get over, well done! Don't overdo it!
@AlbertCampion it must be so hard coping with chemo when you have young DCs. I know now that exhaustion is completely normal, and I just gave into it last year and didn't worry that I should be more active or whatever, I realised I did need to rest much more than I'd expected. But feeling low with is is normal too. Are you worrying about things not getting done or your DS feeling neglected? Sounds like your DH is more than willing to step up?

Thanks folks for your good wishes. It’s been a lovely boost to morale at a difficult time. I’m still struggling with a recurring seroma in my right armpit which has been drained twice and I’m on antibiotics that make me nauseous. On the plus side that has made me lose 2.5 kg since New Year so maybe the Augmentin diet is the way forward.

@backformore and @ElaineMarieBenes I have an ER positive and HER2 positive BC and had a 22mm tumour with one splendid 25mm lymph node. I had a negative CT scan for secondaries. This all qualified me for the Kitchen Sink Regime. I started with FEC-THP chemotherapy and am on Herceptin for a year. I have had a lumpectomy and axillary node clearance but that brave little node seems to have held on to everything as the other 28 they took out were clear.
I have an appointment next week with oncology to talk about the radiotherapy the hormone blockers and the bisphosphonates that come next.
I’m hoping they will allow me a bit of breathing space as I am a bit battered with the broken ankle and the unusable right arm. I am longing to get fit again but they won’t let me get on my bike yet.

@Bloodybridget it is very concerning hearing of patients with delayed operations and delayed chemo. Should mighty Mumsnet be campaigning for cancer patients? Maybe we should start a national information drive and ask our local MPs for help? It’s shocking and will cause harm to patients. I was lucky to get through between lockdowns but I know a lot of people have been told they will have to wait.
As a GP I would want to ask each Trust providing cancer care and each CCG commissioning it what their plans are to deliver timely treatment during the rest of the pandemic. Then hold their feet to the fire to ensure it happens.

Today I've been for the results from my operation. I will be having another operation In a few weeks to remove pre cancerous cells and more lymph nodes removed.
Re-excision and axillary clearance. Then referred to Christies for chemo and radiotherapy.
Not the news I was hoping for. But will take one step at a time.

Ah @Noidea2114 I can see that's quite a daunting treatment plan, obviously more than you were hoping for. I'm sorry, but I hope you have faith in the team and that everything happens when it should.

@TopOfTheCliff I know several of the cancer charities and consultants have been commenting on delays with many elements of cancer diagnosis and treatment, I wonder if anyone's taking any notice?

@TopOfTheCliff that is a brilliant idea for a mumsnet campaign, lots of other mumsnetters (especially all family and friends of patients like us) will be very concerned about this i am sure.

Less urgently I was also wondering if MN would consider having an info section about coping with cancer and chemo, especially for e.g. those with children at home and/or older children we want to help cope (thinking from the mumsnet/parenting angle)

Does anyone know how we could approach MN re a campaign? The situation is so desperate for those having urgent treatment cancelled.

@Noidea2114 sorry to hear that, I would echo everything BloodyBridget has said. You'll be in fantastic hands at Christies. One step at a time as you say xxx

@Bloodybridget thank you. You really are amazing x

Thank you @TopOfTheCliff and good luck. I had surgery first with a double mastectomy plus 17 lymph nodes removed (only a 1cm tumour in first one - all rest clear - but as it was ‘extra capiscular’? So I also had the kitchen sink thrown at me! The oncologist did mention radiotherapy too but has not mentioned since last August! So far H&P on its own has been ok - but we’ll see!).

I am hoping to get back on the bike soon too as like you am longing to return to increased fitness. Hope your arm and ankle fully mend soon and you get a breather (sometimes it does feel relentless!).

Bloodybridget, yes, thymeout's kind and helpful post was much appreciated. You are indeed amazing keeping up with all this despite your struggles. I know of what you speak with antibiotics making you nauseous. Hang in there, they are worth it.

I hope you can get some rest. It is morning here and absolutely teaming with rain over this temperate rain forest. Little dog hates the rain and earned the title of fastest pee-er on four legs before turning around and towing me back into our building. A good day for hunkering down.

Oops comment on antibiotics meant for Top of the Cliff. I will catch on soon, I hope.

I got my letter today telling me to ring if I hadn't heard from them by 7th Jan (yesterday) the letter had a booking number and password. I rang this morning and I'm now on the waiting list that will take 8 weeks at least 😞 I was secretly hoping my gp was wrong.

@TopOfTheCliff & @Bloodybridget maybe a campaigns needed.

I know the chances are very good that it's nothing serious but my mind is running overtime thinking about how our children would cope (dh 40 has terminal stage 4 bowel cancer and is already on borrowed time) I keep telling myself that we have more chance of winning the euro millions! Surely it must be very very rare for 2 partners to have cancer at the same time.

I hope you are all doing ok, dh had chemo this week and the unit was the busiest we have ever seen it.