Cancer Support Thread 93 - The Thread for the Dread and the Not Yet Dead? Everything you need to know about Cancer but didn’t want to know

[LemonDrizzle10]

Shiny new thread.

FFS

I looked up the new drug and that also interacts with it. Why has he prescribed me something that also interacts.!?

I am going to take the anti-inflammatory without the stomach protecting one, because I see the pain consultant on Tuesday so it's only four doses and I think my stomach can take it

@Tilllly I'm so, so sorry, and sad, and shocked and utterly pissed off to read your updates. You didn't have to go to these lengths to ensure you'll be the most important person on this thread. You always were, anyway! And I hate that you are in pain like this. I hope your stomach can handle a few days of anti-inflammatories - have you had issues with them in the past? I'm always warned of stomach problems, but I'm more likely to get them with paracetamol than with ibuprofen, strangely.

My mundane update: I've made it through 3 weeks of work, and I'm exhausted, but have also relocated my "work persona" for the most part. Two more weeks until our Easter holiday, so it feels quite manageable. Grateful for small wins.

Where are you going on holiday @KentishMama ?

No, I've never had any stomach problems, so I figure if I take them with food and avoid spicy or acidic stuff, I should be alright for a few days

It's never simple, though, is it, I can't even die in peace 🤣

Sounds like you may not need the stomach protection that urgently, @Tilllly! Did you manage to get on top of the pain over night?

We're going to Mallorca for a week. It's a bit early in the year for the Balearics, so we're simply hoping that it's dry and mild, and we'll be exploring the island. Not necessarily a beach break. Although I selected the hotel because there is a heated indoor pool because DS8 equates holidays with splashing the the pool!

DS8 is quite right @KentishMama!

I did than you, such a luxury to be pain free

People always share pictures of their pets and I always feel left out. So I share with you my "pets" who come into my garden whacking loudly until they are fed. We call them John and Yoko (third one to be named yet) x

Quacking🙄 although if they could whack I think they would

@Tilllly Apparently marijuana can be useful helping pain. Hope you get some relief.

Hi Everyone - I'm after some information if anyone can help.
In the nicest way possible I had hoped never to come back to this thread but here I am although I have been following Top's thread on recovering after cancer on and off which has been very helpful.

I was here two years ago after being diagnosed with a grade 2, ER-/HER2+ breast cancer. I had a lumpectomy/node removal with clear margins and no evidence of spread. I had 4 months of chemo along side Herceptin which was stopped early after 7 months (should have been the full 12 months) they discovered that I had enlarged nodes/shadows in my lungs. Unfortunately I was not given a CT scan before I started Herceptin (standard practice here but they forgot to do it) so oncology had no idea whether the Herceptin caused the lung issue. My records got lost quite a lot so I probably have not received the care that I perhaps should have. I had my first post cancer mammogram in Feb'23 which was clear and I was declared BC free and in remission. I had a CT scan July'23 to check my lungs which I never got the results of because I had to postpone my oncology appointment because I had an infection and asked for a new appointment in Aug'23. And that was the last I heard from oncology. I was not discharged and they appear to have forgotten about me/lost my records. I left several messages but never heard anything (neither did GP either according to surgery admin). So I presumed that all was well and carried on with life as we do.
Last month I had my second post BC mammogram and I knew immediately that something was wrong (I had had suspicions before Christmas truth be told). This week I have been told that I have BC again. In the same breast, the exact same type and in the exact same place. It has developed next to the lumpectomy scar tissue and is currently 3cms. The consultant seems a bit perplexed. I had a CT scan yesterday and am awaiting a bone scan as I'm in pain under my rib cage on the left side and at the back of my rib cage on the right side. I'm also in increasing pain in my stomach and have a lump come up in my right forearm and in the small of my back on the left side. My joints hurt although the chemo has left me arthritis in my hands - this feels worse.

So my question and request for advice is this - has anyone else had this? I know that Top and several others have had a second go on the cancer wheel of fortune with a different cancer type but has anyone on here had the exact same cancer reoccur in the exact same place? I would be very grateful to hear from anyone who this has happened to as I have no trust in our oncology dept. as there have been issues with all sorts from lost records, forgetting to do diagnostics, poor admin and downright rude consultants. I would like to have as much knowledge as possible before I see the breast consultant and ultimately get transferred back to oncology.
Many thanks

@MothralovesGojira I am so sorry to hear your news. Didn’t Liz O’Riordan the breast surgeon have a recurrent cancer in the same site? She writes about it and has an Instagram channel. I also have a friend locally who has had triple negative pop up again three times. She is fine now happily three years on.
Let’s hope your team make doubly sure to pay attention to detail this time round. You will need all your strength to insist on that. We are here if you want to rant.
All quiet here. We are devising a rota to look after FIL next week. The weather is dire and it all seems rather depressing but I am quietly healing from my hip replacement without drama.

Goodness @MothralovesGojira what a faff! I have no experience but wish you a "good" experience this time around. How awful to be left hanging...I hope you're ready to put on your very best "I am pissed at the lack of communication and care"!

@Florsilvestredelcampo quite envious of your duck friends, we have lots of wood pigeons who live in the sycamore, but not ducks. & we have a robin who very vocally sees off other birds & quite likes sitting in the sun with company at a distance 😊

@KentishMama your holiday countdown made me smile. We have 14 school get ups until the Easter holidays! Half termly pub night with nice staff is already on the calendar 🍷

How is our resident Princess faring today @Tilllly ?

I had a nice, solo, mooch in town today then met dd2 and their dad for a Costa before he left & we nipped to another few shops. Bought myself 2 new lippys 💋, a board game, and a few other bits. Nothing as special as my boots though!

X-posted @TopOfTheCliff , good to see you're healing nicely!

@MothralovesGojira

I'm so sorry to hear your news, it sounds totally and horribly stressful.

I also had / have ER-/HER2+++ breast cancer, although Grade 3 rather than 2, and much more advanced on diagnosis in my case. Our type of BC does grow very fast, so the 3cm could have been in a short time.

When you said they stopped your Herceptin after 7 months, was that because of the issues in your lungs? Have you seen respiratory at all about that?

I'm asking about respiratory because not only is it their area, but I'm under respiratory and found them fantastic, certainly loads better at communicating with patients than oncology. Let alone Open Access after cancer treatment ends; they aren't interested in our subtype at all, they only care about ER+ patients because they support them with oestrogen blockers and DEXA scans which us hormone negative patients don't get. We get forgotten.

I hope your CT and bone scan have the results you're hoping for. Let us know. I'm thinking of you in the mean time xxx

You asked for info, so in case it's useful info for you (might not be considering I was stage 3c i.e. T3-N3-M0 on diagnosis and Grade 3), but this is the treatment I had for ER-/Her2+++ BC:

EC chemo 4 cycles
Paclitaxel 12 weekly cycles (stopped early due to side effects)
Herceptin (trastuzumab) with Perjeta (Pertuzumab) 18 cycles
Full mastectomy
Lymph node clearance all levels they could reach
15 days radiotherapy to various areas.

You didn't mention any radiotherapy. Just wondering whether you had that. Not that I know what your stage, Grade 2 would normally get in the way of treatment.

xxx

@Tillly I've also heard what @1Strawberrycat said about marijuana for pain. I hope the pain is under control. Thinking of you x

@MothralovesGojira
What an horrific balls up from the start

Obviously your priority needs to be your health but maybe speak to a solicitor or your MO. This needs reviewing with a full time line of what should have happened and what did / didn't

@lucysmam
Me or Daisy?

No one has offered me marijuana yet, I don't think they recommend smoking when you have lung cancer - shall keep you posted 🤣

@Tilllly I'm no expert but perhaps you could eat it? Daisy is beautiful.

@MothralovesGojira so sorry to hear your situation. I'm another hormone negative/her2+++ patient (stage 2 grade 3) though this is my first instance. My treatment has been 6 rounds of docetaxel, carboplatin and phesgo. I'm having surgery shortly and then will continue with phesgo or move onto kadcyla. There's a question mark over whether I can have radiotherapy due to an unrelated autoimmune disorder that I have, and I'm still unclear on that. I hope you are seen by oncology quickly and get some answers - it must be very stressful and frustrating.

I hope everyone has a nice Sunday.

Didn't get my immunotherapy on Friday because I'm on steroids - which obviously they put me on so I went to the pub last night. 3 wines and a strawberry daiquiri went down very nicely and my pal and I put the world to rights! Dismal dreary day here today so I think it'll be a chilled movie day cuddled on couch with the collies. Have a peaceful Sunday everyone.

@Tilllly I meant you! But Daisy's as lush as ever 😊

Smooth ❤️

I had chemo and immuno whilst on steroids

@SummerCycling
Thank you for your detailed reply - I'm most grateful.
My original BC was actually a grade 3 (have that in writing) and my new one is currently grade 2 pending results of staging scans. Our breast dept. grades all breast tumours at 2 pending staging.
Back in 2022 I had a lumpectomy first then EC x 4 cycles (at 3 week gaps) along side Herceptin (trastuzumab). I had 9 cycles of Herceptin at 3 week gaps. It should have been 18 but oncology then panicked and stopped the Herceptin because a CT scan (to investigate chest pain) showed lung nodules/shadows. I had two CT scans which showed that my lungs were the same so oncology said it appeared stable but would probably develop into lung cancer later (wtf!) but not to worry and to ask to be referred back if I started doing stuff like coughing up blood (yes, really) and that was it. I have never seen oncology since and they have ignored the two messages that I left asking for info on how I would be monitored going forward.

I did not have any radiotherapy. I saw a consultant about it and outlined my worries about RT (my sister-in-law had died suddenly the year before from damage caused by RT) and asked for some stats on the likelihood of damage to my lungs and/or heart in the area that they were looking at doing. He was an absolute git to put it politely. He talked down to me and refused to provide the info I asked for. All he said was RT would put my 10 year survival rate up to 87%. Oncology had already told me that with all the treatment that I'd received my 10 year survival rate was 86% so I asked him to clarify why the 1% was so important and how that measured up to the percentage chances of damage, permanent or temporary, if I went ahead with RT. He responded by asking me "look are you going to have this or not?" When I replied that based on what he wasn't telling me then I thought not, he slammed his notebook shut and asked me to leave. And that was that. What's interesting is that my medical records appear to indicate that I have had RT and the breast consultant that I saw this week was quite insistent that I had. I confirmed that no I had not and explained why. She was genuinely shocked and said that when a patient 'refuses' treatment then the guidelines here state that a second appointment must be made to address any concerns raised so that an informed decision can be made and other avenues discussed. Obviously that never happened.

So here I am. I feel rather pissed off. Having heard the treatment plans of others on here, I'm starting wonder if I was poorly or incorrectly treated and now I have to make decisions about what to do. I can not afford a long period of chemo as I will only get 6 weeks of full pay. My youngest is 2.5 months off of finishing college and is too mentally fragile to take yet more cancer rubbish so I'm going to have to hide my diagnosis for 2.5 months to preserve their MH and not distract/ruin their final exams. I have things that I can not/do not want to move or postpone for the next four months. Last time the six months of treatment/recovery time nearly broke us financially even though my DP works full time and I went back to work far too early in what is a physical job. My small amount of PIP will end at the end of the year and my plan was to get more hours/better paid job this summer but that won't happen now. With the COL crisis we are going to be in deep shit and no chance of moving as rents even for a smaller house are now the same as we pay or more expensive. And my LL has indicated that he may want to sell our house because he wants to buy a holiday home somewhere sunny. I just can not believe how unlucky we've been but it is what it is.
Anyway thank you for listening to my tale of woe and many thanks to @TopOfTheCliff @lucysmam @Tilllly @demivolte who have offered excellent advice and thoughts.

Yeah, am not convinced he knows what he's doing...........

@MothralovesGojira have you looked into Universal Credit? Macmillan are very good at helping with financial advice. Go to entitled to and put in details as if your wages have dropped. You can’t let money get in the way of treatment (if I am reading the post right) I hope you find a solution. I thank god everyday that I work for the nhs and not a private company. Even then I got a couple of hundred a month from UC. How do you know your PIP will stop? They will reassess you again and now you can add stress to your ailments. It might not stop.

@EachandEveryone
Thanks for your reply. I already know that we won't qualify for UC because DP earns too much. We got through most of our savings last time and haven't managed to replenish much of it since as all our bills have increased. We live in the south so it's expensive & LL put the rent up by 15% last year knowing that I'd had cancer and that my earning capacity was lower. Youngest DC is now 20 so now not classed as dependant even though still doing A-levels but they're ND and is at their second try at 6th form college but will finish this year. Covid, the effects of a life long medical condition and my last trip to cancer world plunged them into depression & anxiety which they're still medicated for and, on top of severe ADHD, their MH is very fragile although college is going well at the moment.
PIP was granted until the end of this year and I know that it will be difficult to get it awarded again even with cancer but having had experience of PIP with DC I thought that I was really lucky to get it at all but I may get a good result next time.
So, I don't really know how we're going to manage it. I will either have to forgo some treatment, opt out of treatment all together or work during chemo - it's a total headache.

@MothralovesGojira I didn't touch my PIP form - part of our local Macmillan did it for me. They just rang for bank info & permission to submit on my behalf. If you can speak to a different oncologist, they might be able to put you in touch with the right people to help you out.