Cancer Support Thread 83 - Here comes the sun (hopefully)

[Silkierabbit]

Welcome to a supportive thread for anyone with cancer to discuss how things are going, ask for advice etc or discuss life in general.

Please feel free to join if you are going through tests as well, hopefully they will come back all clear but if not we are here to hold your hand through the journey.

Named the thread in honour of the lovely LeslieKnope who did thread 62 in the same title who is sadly no longer with us but inspired me with how she was so lovely and kind with stage 4 cancer in her 20s and also the lovely PurpleUnicorns. Thinking of you both. Hopefully there will be some sun inbetween the difficult days.

May be useful to do introductions at start of thread. I am 49, lobular breast cancer, diagnosed Nov 21, after sent for tests then after being dismissed as nothing by GP in June. 46mm and 17mm tumours with 1 lymph node involved. Had 2 surgeries, currently doing chemotherapy, radio next then hormone tablets. 1 husband and 2 kids 16 doing gcses and 15 with SN and mute. 1 Maine Coone kitten, 3 silkie chickens and 1 indoor rabbit.

Thanks, AGreat and Jelly, good to know there are posters out there who empathise (and who are also awake in the small hours!). Couldn’t sleep a wink, so kept Googling for info! I know, I know. It seems that clearing level 3 is highly unusual and not recommended cos of risks to mobility, etc. You r need a v v good reason to do it. It’s mainly done if there’s extensive spread in levels 1 and 2/seen in level 3. If it’s in level 3, it’s highly likely it’s spread to other parts of the body. I’m going to try to get hold of the surgeon today, as it’s cruel to write ‘2 x IBC’ on the note he knew I’d see without explaining it. I have to wait two weeks for the histology report. My children don’t know yet. My daughter is working abroad until October. How do I tell her? She’ll be on the first plane home and will never go back. Gosh, life can so easily change in an instant. Lost my job of 13 years last summer, too, and have been freelancing but have given up now. Welcome to my pity party!!!

A friend has advised I should start a PIP claim now I’m diagnosed, does anyone have any advice or insight? My paid leave will end in a month and I haven’t even started the 5 month chemo round yet so finances will be tight. I’m not sure about ESA etc as my DH earns and I’m not sure if it’s income based? We’re going to struggle if I can’t go back during chemo. Is a PIP claim difficult for cancer? What happens?

Great I have never tried for PIP so don't know about. But I get the non-income based ESA now. That is worth putting a claim in form though took about 3 months before mine was correctly processed but then I got £77 for first 14 weeks (and can be backdated 3 months) then something like £115 a week from mid my chemotherapy (end of 14 weeks) to start of November 2023. We don't meet criteria for income based one as DH works and savings and a lot of extra things are linked to income based one but still it makes a difference. I would say apply as soon as possible. I applied at start of chemo and asked for it to be backdated 3 months. I would read what it says about PIP criteria, when I gave it a quick look was to do with things like mobility, needing care though think it included mental health. I think some people with cancer get it. Macmillan I think can also advise.

Try I would phone and see if you can get some answers. I never saw any results until about 2 weeks to 3 weeks after surgery and as far as I know surgeon was just writing things about type of surgery not results. I think the surgeon has a good idea as cancerous nodes look different but it could be what he/she wrote is not the results but code for something else. Also they totalled nodes in mine so it included the original one as well. Well there was only 1 but they added them up so it went from 1/3 to 1/25 and I think up to 3 nodes is stage 2 if the lump is not greater than 5cms. I had full node clearance.

@AGreatUsername are you near a Maggies? They tend to have workshops and 1-1 sessions with financial advisors. Also apparently Macmillan offer advice on the phone as well. However, I have never applied though both of these were suggested when I was first diagnosed.

Hey, silkie rabbit, did they only clear levels 1 and 2? The surgeon did say, pre-op that he’d be able to tell if nodes were looking dodgy, hence the worry. And that was just what he saw-closer investigation by the pathologist might yield more. You’d think that something visible to the naked eye would have been picked up on ultrasound, though they are only 70-80% accurate.

AGreatUserName: with benefits, I contacted Maggie’s, who told me to apply for ESA. I applied back in May, but it’s only just being processed now and probs won’t see any money for a while. You’ll need a p45, plus a fit/sick note from your GP. Macmillan are also v good-they can tell you about applying to your utilities’ suppliers for a reduction. And don’t forget to ask yr GP about applying for an exemption from prescription charges. All while coping with your diagnosis, of course!!

@AGreatUsername I'm sorry to hear how low you have been feeling since your op and results. I remember feeling equally bleak. I have stage 4 ovarian cancer ,stage 4 because it had spread outside the abdomen it was on my diaphragm and rectum I'm not sure about lymph involvement. They removed it all and chemo mopped up what was left. My surgeon told me that if when he opened me up he didn't think he could remove enough cancer to be able to give me a good outcome he would not put me through such a large operation. The fact that he did do the op has given me a lot of reassurance that 'not all hope is lost'.
I was unable to feel anything but chaotic and hopeless during treatment and lot of my 'Zen' like appearance now has only come through reflection It's fragile I reserve the right to fall apart when my next scan is due! It is possible to live with cancer but go easy on yourself it takes time xxx
Ps Macmillan did my claim for ESA the hospital put me in touch with them at diagnosis.

Try They told me they were taking a full node clearance on the right and taking them all out, did not mention levels but think it would have been all of them. I had 1 positive out of 3 initially despite ultrasound, MRI and mammogram showing clear though maybe it went into there between diagnosis and the surgery. Then the full node clearance showed no further cancer cells at all in the other 22 they removed. I have full movement of that arm, I have done daily exercises every day since Jan when I had that op but only 5 mins a day, I was told when I asked to do them for rest of my life. It did take about 2 weeks to get full movement and first week I had a lot of pain and stiffness but it was largely take painkillers and do the exercises to get better.

Waiting for results is terrifying and I am also nervous about radio as it said 3% to 8% chance of lymphoedema after that but currently no sign at all, I also still need breast construction later, but I did not need draining after home from second surgery (and only once after first - no drains put in) so they say I will probably be OK from radio. I did need chemo because of the lymph node involvement, well with my hospital it was that Predict Breast thing online, 10 year results, select hormone therapy (if hormone positive) and chemo 3rd gen and any other treatment relevant and if its under 3% benefit no chemo, 3% to 5% it goes off for a further test to see if chemo benefit, over 5% chemo is recommended though you can turn it down. Mine was 6% and I persuaded them to send results away for extra test but it said high risk chemo benefit so I did chemo. Not sure if it was right decision to get extra test as it delayed things 3 weeks but I was so terrified of chemo. But once you have done first chemo you get a good idea of how it can be and report any side effects immediately and there is a lot they can do. You also get a 24/7 number to call which is great. Mine has recently finished and although I hated it on balance I think it was the right thing to do.

Hope you can get some answers before too long.

Re ESA mine took ages but the first one came through as a lump sump of just over £1,000 which was lovely. It was invested in Mr Floof.

Waiting for results is terrifying and I am also nervous about radio as it said 3% to 8% chance of lymphoedema after that but currently no sign at all, I also still need breast construction later, but I did not need draining after home from second surgery (and only once after first - no drains put in) so they say I will probably be OK from radio. I did need chemo because of the lymph node involvement, well with my hospital it was that Predict Breast thing online, 10 year results, select hormone therapy (if hormone positive) and chemo 3rd gen and any other treatment relevant and if its under 3% benefit no chemo, 3% to 5% it goes off for a further test to see if chemo benefit, over 5% chemo is recommended though you can turn it down. Mine was 6% and I persuaded them to send results away for extra test but it said high risk chemo benefit so I did chemo. Not sure if it was right decision to get extra test as it delayed things 3 weeks but I was so terrified of chemo. But once you have done first chemo you get a good idea of how it can be and report any side effects immediately and there is a lot they can do. You also get a 24/7 number to call which is great. Mine has recently finished and although I hated it on balance I think it was the right thing to do

This process sounds absolutely amazing.

Id never heard of it till now.

Thank you, ladies, for the feedback. @Silkie: you only had one node involvement so I can see why there might have been a question mark over chemo. My surgeon said they would do the oncotype test to decide, as they wouldn’t routinely advise chemo with just one node. However, it seems like I have at least 3 nodes with cancer, so will defo have chemo. Tbh, I want them to throw everything at it, regardless.

@Runningwithoutstopping

I have OC and was diagnosed as Stage 3C, it was also discovered on my diaphragm, but this diagnosis has never been upgraded to 4 . Im wondering now if I should ask at my next consult. Ive always felt slightly more reassured that I was still a 3. I suppose in the scheme of things it doesnt make much difference, but its the psychological load

I was recommended chemo based on the Predict Breast score (its a combination of factors not just nodes and if you are pre-menopausal like me chemo is more likely to be recommended) but I begged for oncotype as was scared of chemo. That also came back highly recommended to do chemo, high risk of reoccurrence. My lumps were quite big at 46mm and 17mm and if they had combined would have put me into stage 3 but as they had not combined I was very top end of stage 2 as they do results based on the worst cancer not both combined when in same breast. Its difficult with chemo if you are borderline as there are risks to it as well but at least you can feel you have done all the treatment you could if you do it.

Nana I was super anxious and told them I wanted all the data behind it as I think in numbers and they went through it with me. I think message got through before radiotherapy as they sent me a letter with all the data in. Though at the end of the day you either have something or you don't but I like to know how much chance. And also once I knew risks I could phone and ask how can I minimise this risk and then they would say more like the lymphoedema they said do the exercises every day for rest of life whereas before just been told do after surgery. From what they said they don't give most people the info as they told me normally people just go with whatever they recommend and don't question that much or they said it was very rare for a patient to understand things as much as I do. Was probably a polite way of saying I'm a difficult patient but prefer to know everything as its literally you life on line here. Also found it easier to motivate myself if I knew exactly why I was doing it.

@thereisonlyoneofme and @Runningwithoutstopping my OC was staged at 3c which I queried with the onc as he had confirmed all my tumours were confined to my pelvis. He said it was because I had malignant ascites throughout my abdomen. I wasn't told about any lymph node involvement though.

See I’m 3A1 OC as I had 2 ovarian tumours and at least 8 abdominal lymph nodes involved. Everywhere else was clear including omentum and peritoneum, I can only assume the lymph nodes were involved due to the malignant ascites. I am still so confused as to how it works and why we’re not panicking that it has spread much further due to 5/5 left side nodes being positive…..i certainly am even if the doctors aren’t, especially given the 10% success rate of Chemo on low grade!

Im stage 1a OC with infiltrative stromal invasion. It means the cancer was on its way to my lymph nodes. However, it was still contained inside the ovary and my capsule was intact. There weren’t any ascites in my washings. Had there been my staging would have gone up to stage 1c and it would have meant routine chemotherapy for my type of OC.

Yes, I can well understand wanting to know how much chance there is of a reoccurrence. I’m the very same. Even now.

And I think the Drs here had the Ovarian version (or a version) of this scoring system because I can recall my daughter saying to me - they’ve done their calculations mama and they’re confident everything is in your favor. But maybe I’m confusing it with something else.

I've been quiet on the thread for a while now as I've just been trundling along to my 3 weekly Herceptin injections and passing various anniversaries - most recently one year since my mastectomy, which hit me quite hard considering I've been very pragmatic overall. Anyway, at my Herceptin appointment yesterday I was most surprised to hear it was my final one! The chemo nurses were confused why I'd only had seven so I had to tell them it was probably due to me previously having had seven Kadcyla sessions but had to stop due to liver concerns. I felt rather elated and had a celebratory couple of glasses of fizz in the evening. I'll have a follow up with my oncologist, see if I can get treatment for my post-mastectomy frozen shoulders, try to get sorted on an aromatase inhibitor I can tolerate (or Tamoxifen) & await reconstruction surgery. I'll keep on the thread though to see if my experience can help anyone else.

Super-impressed with @TopOfTheCliff 's completion of her post-cancer odyssey! Well done that woman!

I almost feel bad posting this as others haven't been so lucky revelry but some good news today. My sentinel lymph nodes and excision were all clear!

I've got one heck of a scar on my back and I'll be on 3 monthly follow up for at least the next 3 years, but I'm clear.

I am so relieved it's hard to describe.

@Confusedasnormal that is wonderful news and don’t feel bad posting it, we need things to celebrate round here. Hope you heal up quickly
Thank you @HauntedDishcloth it has been strange coming home. I like “ post cancer odyssey” I might have to steal it. We have been rapturously received by our sailing and cycle clubs who are helping us with the fund raising. I think we will have over £10000 for the green cancer charity soon. I am finding it a bit weird being made a fuss of but hopefully it won’t last long.
I have been doing lots of life admin, booking dentist and haircut and manicure preparing for DDs wedding soon which is going to be a brilliant day. Less agreeably I have been addressing my health problems, getting referred to the lymphoedema clinic as the hot weather has made it clear my right arm is quite swollen. I also need a hip replacement so I’ve started that ball rolling too. It depresses me to think of more surgery but the pain is getting tiresome.
As I can’t see the BCN till mid August I found a private nurse who does manual lymphatic drainage. This is amazing, she basically stroked me on my arm, side, and back to activate the lymph channels and suggested I brush myself with a soft brush to clear the fluid. It’s all a bit bonkers but it seems to be helping, as does exercise so I am back on my bike and going to Pilates and yoga but it’s a bit hot for more.
Who here is dealing with lymphoedema? Any tips?

Sending love to all especially @Tryhardermum and @AGreatUsername who are having a tough time right now. Just keep plodding along and things will change for the better!
Top

@TopOfTheCliff I havent had full blown lymphedema yet, but I did go to the specialist PT in early April about cording that was way down into my thumb and a general puffy look to my lower arm. She broke up the cords and worked the stranded lymph around - said it needed to be rechanneled. I had some slight swelling at the time and was fitted for a sleeve at the lymphedema clinic (I had a lot of pitting when I saw her first, so she referred me) which I never really need. My cords are all gone and now she just works on the pectoral tightness.

She did show me manual massage and exercise to do and I do them for prevention, but like you, ive found exercise is best to keep things moving. I do light hand weights and a 10 minute arm routine I found on YouTube twice a week and not only do my upper arms look great now, it really helps keep the arm mobile and the lymph moving. I also do a barre type programme so lots of stretching and other stretches throughout the day.

That’s just fantastic. 💐🍷💃

Many years ago I had a lymphatic drainage massage as my friend who’s an alternative practitioner thought I’d benefit from it. Well, I don’t know what she did but minutes after it was finished I had to go for a wee and all that passed was an espresso sized cup of a very darkish brown liquid/wee that has me still thinking about the wonders of it many years later. Honestly. It was amazing. 🙈😂

@TopOfTheCliff I have seen the lymphoedema team at my local hospital. They are excellent. I was measured in one inch intervals on both arms. The results were put in the computer to calculate the increase in limb volume. Mine is considered mild as it's less that 15% difference (if I've remembered correctly) between the 2. My upper limb is worse than the lower and my hand is not affected. I have been fitted with a sleeve which I wear for gardening and exercise. I also wore it on a flight recently.

I wear insect repellent every day on my affected arm and keep it well moisturised. I kept it covered out of the sun as much as possible.

I have prophylactic antibiotics at home as I've had one bout of cellulitis triggered by a steroid injection to treat a frozen shoulder.

The specialist I see is brilliant. She is working to open more drainage channels with massage/fascia release as I have a lot of scar tissue to work around. I have been measured since starting and the volume has decreased. I must say it doesn't really bother me on impact daily life - I am just trying to keep an eye on it.

For weight lifting I have started low with lots of reps and will build up to heavier weights. Most of my clothes still fit me but I have not yet lost my lockdown lard and to clarify my previous post this is what was bothering me around the pool rather than anything BC related! Losing this 10kg is my next target

@Tryhardermum I hope you are doing ok after surgery.

@Confusedasnormal - it's lovely to read good news.

Love to all x

Just dropping by - high @HauntedDishcloth @HerbalRefreshment and the irrepressible @TopOfTheCliff

I didn't get lymphedema but there are some residual issues on that side that have improved over time - but I'll certainly never play tennis again.

Anyone else got neuropathy in their hands? I've had to stop wearing rings as it aggravates it.

Top - I can well imagine how you feel about more surgery. My surgeon suggested more surgery to deal with issues arising form the mammoplasty and I was horrified - no that you I'll manage!

My commiserations to those anxious about their staging e.g. stage 3. Just to give another perspective - when I was first diagnosed we were all realistically braced for a full on stage 4 (I had clear lymph node involvement, odd liver function and back pain...). But the CT said otherwise - it was 'only' stage 3 and the relief was immense.

Like Haunted I didn't get on with Kadcyla (did 5 of 14) and didn't follow up with Herceptin as it was aggravating the same issues - I just have to hope for the best and you know how that goes - good days, bad days - every headache is a tumour yada yada.

I've been working PT for years but I'm about to go back to work FT. I actually got more depressed after treatment ended and I went back to the same old same old with no change in sight. Out of the blue this job came up in my old, very niche field, and I am quite excited about it (but a bit scared too). You re-evaluate a lot of things about your life when you know bell may gearing up to toll. It's hard to plan to live and die at the same time. I know my prognosis is about 50-50 over 5 years - and there's no use crying about it (but you can if you like) - from Larkin:

'............... Courage is no good:
It means not scaring others. Being brave
Lets no-one off the grave.
Death is no different whined at than withstood.

My cheery thought for the day 😀

Great to hear good-news stories and posters finding solutions to lymphoedema issues. I r don’t know how you all manage to live-I’m not there yet. Hopefully, I will find my path. I’m on day three of Sertraline-it might be psychosomatic but I feel a tad better-still teary but not in a convulsing, howling-weepy way. However, I feel very tired, which is probs a side effect. Had a call from the Job Centre last night reminding me of an in-person appointment today to process my employment support allowance claim. I didn’t know I had one. I explained that I’d not long had surgery and wouldn’t be able to travel and he got r angry and put the phone down. That made me cry. Why are people so cruel? I’ve had a lot of that since my diagnosis, mostly from NHS staff. Sorry, I don’t seem to have much to report that’s positive. Still feel like this isn’t my life and I’ll wake up soon to find it was a (bad) dream.