After nearly 8 weeks I have finally found out that I am HER2 positive as well as ER+. I think I’d just got my head around having surgery and radiotherapy. Now the HER+ has put a spanner in the works. Mammogram shows 2.4cm while ultrasound was 0.9cm. It feels like 2.4cm. Now am waiting on MRI scan date as oncologist won’t agree chemotherapy and Herceptin before surgery unless it it at least 2cm. Another bank holiday to wait, now 5 so far.
Got The Complete Guide to Breast Cancer book by Trisha Greenhalgh and Liz O’ Riordan (GP/academic and breast surgeon respectively and both had breast cancer). It’s helpful and easy to read but without a plan of my treatment I’m still in limbo.
The breast care nurses has been great explaining that treatment is individual to me and better to have the right treatment first time. I live in Wales and the triple assessment was 4 1/2 weeks after seeing GP but I did have a mammogram 10 days after seeing GP. Since being so far behind with waiting lists they have reorganised to have mammogram then place you in red, amber or green and be seen within 6 weeks by a surgeon. How is everyone else’s NHS treatment so far?
Im off work as I can cry at the drop of a hat and I work in school and I can’t be doing that in front of young kids, not to mention all the bugs going about still, let alone be able to walk out if I need. I don’t want to delay any treatment by catching anything.
I have so many things spinning around in my head, I’m not sure what to think or say. I can’t sleep, hot surges (not a flush) several times a night, then I dwell on my thoughts. I’m 54 and have been on HRT which I stopped as soon as I saw GP, had coil removed this week.
I tried another major cancer forum but have only received on reply. Hopefully this will be more interactive as it’s only breast cancer.
We’re sorry to hear that your waiting for an MRI before anything else can be set in motion.
I am sure you will find lots of lovely, helpful people here on the forum.
Please know that we are here to support you and you may find it helpful to speak to one of our breast cancer nurses. It can help to have someone to talk to about all this and who can offer that additional support. You can contact them on 0808 800 6000 but the helpline is closed over this bank holiday and will be open again on Tuesday from 9am.
Hi naughty boo sorry you find yourself on here, do use the forum and all that bcn can help you with, read the threads and join up to them as and if you want to we’re all here and everyone understands and just gets it, do think of this as your safe space to share as much or as little you want everyone here will reach out with tips, tricks or anything they think might help a bit and it’s all done with kindness and compassion on here bcn cares and so do all of us on here Shi xx
Welcome! I will add that you having HER+ might arguable now be a great thing. It has an immunotherapy and a fantastic immunotherapy at that. So yes it’s a longer treatment but you have an excellent shot at never hearing the word breast cancer again when referring to your own body
What a bloody palaver @naughty boob - let’s hope you’re code red after the MRI so you can crack on through this. Post-Covid backlogs have made a difficult situation much harder. I was diagnosed last July and was sent to six different hospitals in two separate health authorities to get things sorted - quite stressful but I was and am immensely grateful for it. In many ways, you are going through the worst phase now - still reeling from the diagnosis, feeling wobbly because things change after each appointment, no concrete treatment plan. We all crave certainty but it’s not always possible with this tricky blighter. This phase will soon be over and you will feel so much more in control as the treatment starts and you can tick off the days to completion of each stage. There is a wealth of knowledge and support here and you can ask or say whatever you feel without judgement. I also highly recommend a call to the BCN nurses - it’s unbelievable how much better you feel once you’ve chatted things through with them. Keep us up-to-date with how things are going.
Last week I thought great I’ve got my treatment plan of 6 cycles Carboplatin and Docetaxel along side Phesgo with the later continuing for a year to treat HER+. But another spanner in the works is my co morbidities and my family history along side the fact they have found another smaller tumour that is ER+ in the left breast (awaiting HER receptors). They have also suggested genetic testing as they believe it to be two primary breast cancers as the MRI and Ultrasound show clear lymph nodes in both sides. Possibly mastectomy rather than lumpectomy ?
Had a phone call to say they may now be doing surgery before drug treatment plan and that I can only have 1 chemotherapy at a time with Herceptin (instead of Phesgo which is combined Herceptin and Perjeta) to minimise reactions.
I’ve just returned from a short break before the chemotherapy was to start now I’m all up in the air again. Have to wait to see surgeon and oncologist on Monday.
I’ve been digesting my treatment plan. Chemotherapy being delayed until August.
plan changed due to family history and my own health conditions. MDT decided as my largest tumour is 2.1cm they would do surgery first as they were worried I may not be able to cope with the chemotherapy and Phesgo before and if there was a problem it would have a knock on effect on surgery. They decided it was best to remove the cancer then do treatment.
Even though I’m bilateral primary cancer they will still do lumpectomy, the Pacitaxol for 12 weekly cycles with Herceptin only 3 weekly for 18 cycles, followed by radiotherapy on both sides (they debated the left side due to more heart issues, but oncologist was happy with targeted radiation). With Tamoxifen. They thought this treatment plan would produce less problems.
Was advised could have just hair thinning but I’d already booked to have hair cut, so my bob is gone and now have shortish pixie crop. The hairdresser is an ex pupil now 25 and he booked his last slot of the day for 1 1/2 hour slot in case I needed it and he was working alone that afternoon. So grateful, I took my husband for support which was good.
Surgery is Wednesday next week with wires and tracer on Tuesday as they can’t do it on the morning of the operation.
I have been reading all your post, what a journey you have had, I would like to wish you lots of luck with your surgery next Wednesday, health and happiness going forward.
When you are feeling up to it, please let us know how you are doing, been kind to yourself lots of TLC and take all the help offer to you.
Good luck on Wednesday @naughty boob I’m sure it will be great relief to have the damned thing out. It’s a long road ahead but your MDT have really nailed down what they think will work for you, all things considered, so go forward with confidence in the process. It’s good to hear that you’re getting great support from those around you. I will be thinking of you on Wednesday.
I LOVE your handle! What a great username. It’s absolutely appropriate.
I’m a 17-year bc survivor. I was diagnosed at age 48 in 2006. It was definitely a shock, and even though it’s been so long ago, I remember exactly how your feeling. I was living in the Washington DC area at the time. Now, I’m retired and live in Virginia Beach, VA. When it comes to healthcare, things are a ton different in the States than they are in the UK. I think there are benefits and drawbacks in each, but truth be told, you’re kinda stuck where you are when you’re diagnosed, so you do the best you can.
Brief description of my bc and treatment: I had lobular carcinoma in situ (less common than ductal carcinoma in situ); size was .7 cm; lumpectomy and Sentinel node removal; ER+, PR+, HER+; lymph node negative; 6 rounds chemo (not really necessary, but decreased the chances of recurrence by 3%); 28 radiation treatments; 5 years on Tamoxifen. Overall, have to say the Tamoxifen was the worst because it was five years and the hot flashes were awful, but I made it through.
My best advice to you: You’ll hear a lot stories about what it’s like to be diagnosed and treated. But this is YOUR story. Make it a good one. This is advice my Nurse Navigator gave me, and I’ve never forgotten it. I had a positive attitude (almost) always. I decided that until I heard differently (bad news), I was fine. When I heard bad news, my first question was: So what do we do about it? Make sure you have (and accept) a support system – family, friends, coworkers. I couldn’t have made it without them. I worked all the way through chemo; I took 2 sick days in 18 weeks and worked from home four days. After each chemo treatment (I had one every three weeks), I laughed, smiled and danced my way out of the doctor’s office – I was one day closer to the last treatment! Radiation wasn’t a problem. I used aloe (directly from an aloe plant) on my boob after each treatment and didn’t have much pain at all.
Everyone is different. This is a challenge, I won’t lie to you. But when/if you’re feeling sad/down/scared, picture a slightly overweight 66-year-old woman with too many wrinkles on her face who lives in Virginia Beach dressed in a pink tutu with a fancy, tiny crown on her head shaking pom poms and cheering you on to the next step in this journey. It’s your story…make it a good one.
Thank you so much for your response. It was nice to hear a positive story. The oncologist said to me that in 10 years time I’ll look back at this time as something that happen but doesn’t define me.
I will be thinking of you in your tutu with a crown dancing around with your Pom poms cheering me on on Wednesday for my operation.
This forum has been brilliant talking to people about my situation and hearing about theirs in a non judgemental way. It has been support all the way from people I’ve never met.
I am trying to be positive but over the past few weeks I have more bad news than good, but at least the cancer will be gone on Wednesday and that’s good news.
Your advice on accepting help is something I have taken on board. 8m the type of person who does everything for themselves and offers to help others, rarely needing or asking for help. I wanted to keep my diagnosis quiet from many people but I’ve realised I need to tell everyone. They need to know if I don’t want to speak or see them I may not be physically or mentally up for it. Everyone I’ve told has been brilliant.
Wishing your all the best in Virginia Beach, it’s a long way from the UK and I’m so grateful that you reached out. Xx
Yes it will be a relief to have it all removed. I’m taking it as one job at a time. Operation, Results, Chemotherapy and Herceptin, Radiotherapy then Tamoxifen. There is no point thinking so far ahead, it just messes with you. X
I have had to learn to accept support and help but it is hard for someone who does everything themselves and rarely asks. But I know I’m going to need it. X
Surgery done on Wednesday, absolutely black and blue both sides but at least only one incision on each side as they managed to get the biopsy done through it. I was sick 3 times afterwards, the anaesthetic did everything he could to prevent it. Given one lot of anti sickness, the second time they just left me as I didn’t feel sick anymore, dinner came two bites and sick again. More anti sickness and two slices of toast all settled. Went home at 8pm.
Took codeine for two days only as it makes me fuzzy headed, nauseous and constipated. I had to ask several times for lactulose or senokot. The night staff suggested we stop of somewhere to buy on the way home! Eventually she gave me lactulose. It only helped a little still constipated 3 days later.
Thinking of you, wishing you well, naughty boob, one day at a time, lots of TLC, lots of fresh vegetables and fruit and rest as you said, your first hurdle is over.
Keep posting and let us know how your getting on, we are all here for you.
Sounds like an icky experience that you managed to handle brilliantly! Good for you! I hope it wasn’t envisioning the shaking of the pink tutu, Pom poms and crown that brought on the nausea!?!
Now on to step two….whatever that turns out to be. (Sometimes those naughty boobs have a mind of their own and throw a curve ball into plans.)
The lots of water and veggies is great advice. A little hard to handle when you don’t feel well, but a healthy way to go. (Personally, I took senokot and it did the trick after about three days.)
You are doing well. You are strong. You will make it. And as my ma used to say, “Nothing lasts forever.” That got me through many rough, tough and tumble times.
Here’s a cheer for one tough gal: Ra ra ree, kick ‘em in the knee! Ra Ra ru, kick ‘em in the other knee. Wait, that’s the wrong cheer. Well, you know what I mean: You’re a survivor!
Sign me: Been there, made it through one step at a time, you will, too. mlbcsurvivor
I found kefir grains that are soaked & grow in milk helped greatly with constipation. It’s a very sour taste but I just put 2-3 teaspoons of the resulting milk in with my morning yogurt and the it’s fine. You usually end up with too much so often people will give the grains away on Freecycle etc
