Hi @lilly123 I’m so glad that you will have a clearer idea of what is going to happen on Friday. Pretty much everyone says they feel so much better and more confident once they have that treatment plan and know the way forward. I know I did. In fact, I was able to take a week’s break back in February just before my chemo started. I hope it all fits around your holiday and you can go away with the knowledge that everything is in hand and you can hit it full steam ahead on your return. Let us know how you get on Friday.
I would mention your holiday to your team and see if your treatment can be safely delayed so you can still go. They will be able to guide you to the best option for you.
I was able to have a short break in the U.K. before my surgery, then before my chemo last year and it was so needed. I didn’t have another break until May this year until I felt much stronger as I’m still continuing with Herceptin and I get side effects for up to 5 days.
I hope you’re all getting some enjoyment out of the lovely weather.
I have received a letter this morning, it’s from my breast surgeon and is exactly the same as a previous letter I had which outlines my diagnosis and recommendations.
However they have added a little bit on to this which says for me to see my GP and get my Mirena removed! I have oestrogen and Progesterone negative and HER2 positive cancer so I’m not sure why I need to have it removed as my cancer does not use progesterone to grow. Therefore cannot see why.
Having this removed is going to cause me such horrendous pain and periods which is why I went on it in the first place. I really don’t want to suffer with this as well.
Has anyone else had. Similar issue?
Will discuss this with my oncologist tomorrow.
Roll on tomorrow
Xxx
@lilly123 - I’m so sorry to hear this. Like you need another thing to worry about. I was not told to get my Mirena coil removed at any point. I was told to come off HRT but not get the Mirena coil removed. I will do so now as the chemo propelled me into full on menopause which I had already started and I’ve just had my bloods done and am through and out the other side so there is no point in me having it anymore. Definitely one to discuss with your oncologist tomorrow. Good luck and let us know how it goes.
Iv had my oncology over the phone appointment which wasn’t easy but I recorded it so I could go back and listen again which was helpful once I remembered an hour later that I had recorded it
I have been given my plan which is 6 cycles 3 weekly of Docetaxel and Carboplatin chemo and trastuzumab and Pertuzumab. Sounds an awful lot all in one go.
Followed by surgery and if all margins and lymph nodes clear just the targeted drug Pertuzumab.
He was not sure about timescales but said within three weeks. So I told him my holiday dates.
So that’s it and now more than waiting for appointments. I guess something we all have to get use too xx
Great news you have your plan. It does seem a lot, I was originally given that plan then with a family history of heart disease and a smaller tumour than they originally thought they changed it to Paclitaxel and Herceptin.
I had a mirena coil as part of my HRT and was told to have it removed. I was ER+ PR- HER2+, so the coil shouldn’t have really been an issue but as I was stopping my oestrogel I didn’t really need it. I was 54.
The chemo will probably affect your periods as it causes most people into early menopause, I would give your breast care nurse or the BCN nurse 0808 800 6000 a call to double check this in your case.
Great news that you are getting straight on with treatment. I had 4 x EC, followed by 12 x Paclitaxel. The combo of Trastuzumab and Pertuzumab is called Phesgo and that is the drug I am on. I have finished my chemo now and just have the Phesgo injections every 3 weeks until the spring of next year. My mastectomy is next week.
I have been told at Marsden that they like to get straight on with chemo for HER2+ breast cancer (known as neo-adjuvant therapy - the things you learn!!) and follow it up with surgery which is what they are doing in your case. It will be great if they do one surgery and all your margins and lymph nodes are clear.
It may sound a lot but it sounds right.
@naughty_boob is right that chemo stops ovaries from processing eggs so periods stop. But I think that as you are young, that will be a temporary state. Good idea to give those wonderful BCN nurses a call so you know what to expect. I am 53 so that’s it for me. Flung into full on menopause and out the other side in a matter of months but I can’t say I’m sorry!
I’m so glad you’ve got your treatment plan @lilly123. How are you feeling? Did you get your scan results too?
On another note, looking for peoples experiences of paclitaxel compared to EC. I’ve just had my third round of EC and was due to be moving on to 3 rounds of docitaxel (every 3 weeks) but the oncologist has just changed it to 9 rounds of weekly paclitaxel. I’ve found that it takes me atleast a week to recover after each round of EC and am wondering what people’s experiences are with paclitaxel? Thanks
I had Paclitaxel for 12 weeks and found that for the first few weeks I had several days feeling ok including another day sitting in the chair. By 7/8 weeks it was more bad days than good, maybe just 2. The side effects are cumulative.
This could be different for you as you’ve already had EC and your immune system has already lowered. As with everything everyone reacts differently even on the same treatment.
Good point that we all have different experiences. It found it difficult finding out about others experiences as you can’t guess whether the same will apply to you. For that reason I haven’t tended to share how I felt. But I thought it might be useful here so you know that there are a whole range of experiences. Discussing this with a friend, we decided that the list of chemo side effects is like picking from a buffet wearing a blindfold. You won’t know what you’re getting but you are unlikely to get everything on your plate.
I had 4ECs (1 every 3 weeks) before I started Paclitaxel. My first paclitaxel was my least favourite - I had a fair amount of pelvic bone pain. I was dreading the next 11 rounds but they were all much much better. I got a little bit tired by round 11 and really hated the taste of water on day 5 of each cycle (weird as everything else tasted fine and it only lasted for one day). Having said I was tired I was well enough to carry on working throughout.
I don’t think I did anything special that helped. There’s a lot of luck involved. I did eat a lot of cashews, pumpkin seeds and 85% chocolate to help keep my magnesium levels up. I also drank lots of water as instructed. I also ate a lot of cheese straws but not for any nutrional reason, just because I like them!!!
Hope all goes well for you through your treatment.
Hi, this is my first post on the forum although I have been in touch with some of the fabulous ladies from ‘Someone like me’.
In lots of ways I am very lucky in that my breast cancer was small and detected very early. As I had two areas to remove and was unable to have radiotherapy (I have had it previously many years ago) I had to have a mastectomy. The results confirmed stage 1, small cancer, oestrogen +, however I am HER2 positive .
I was referred from the breast clinic to the oncologist. When I met him last week he explained that it is borderline if I would benefit from chemo and he wouldn’t recommend it but it was my decision. My chances of the cancer returning are thankfully small and chemo would reduce the risk a little bit further but there are obviously risks with chemo (especially as I’ve had it before).
My dilemma?…….I think I need to follow the advice of the oncologist (no chemo) but I’m not sure how I accept my decision and not live with a constant ‘what if’. It would have been much easier if the oncologist had made the decision for me!
Oof. This is tricky. What might help is for him to give you actual numbers in terms of how much percentage risk it reduces recurrence by. Chemo isn’t without risk itself. Serious risk. so he’s probably weighing up all these risks and advising you as such.
In any case, even if you didn’t have chemo, you would be under intense lifetime surveillance! Many women like you do not have chemo. If I’m not mistaken Olivia Munn was an example: no chemo, surgery only and anti-osteogen drugs.
Either way I think build a good relationship with your oncologist. Tell him/ her you’re conflicted and ask if you could meet them again after you’ve had some time to think about it. Also worth asking for a second opinion or to be discussed at an MDT.
Yes this is a hard one, do I follow the advice or do I push for chemo? It a personal thing. Your case would have discussed with a multi disciplinary team and they use the Predict tool to work out your percentages for each treatment. They also have to weigh up the cardio toxicity which can be caused by Chemotherapy, Targeted Therapy such as Herceptin and Radiotherapy on your left side.
Here’s the link to Predict, I hope your team would have talked you through it, but you can do it yourself.
You could also ring the BCN nurses here
Helpline: 0808 800 6000 (Mon-Fri 9am-4pm; Sat 9am-1pm). Speak to our trained helpline team. No questions are too big or too small.
Or call your own breast care nurses and chat it through with them.
Hope you make the decision that feels right for you
@wu21
Hi, like you I had a grade 1 ER+, her2 +++, also surrounded by some DCIS. I’ve not even been given the option of chemo or herceptin, though have read since that nice guidlines say to give it for T1c and above which mine was. I can only think its because the PI was 15% so relatively low and it was a rare slow growing cribiform with an even rarer her2, so not met anyone like me, because its so rare to express her2 with cribriform. Can’t say I’m too upset about less treatment, means I can get back to work within 6 months hopefully so I won’t loose too much pay.
@rrey I found Paclitaxel way easier than EC and because mine was 12 x weekly Paclitaxel, you don’t get the highs and lows of having it less frequently and it’s more steady. Apart from the niggly side effects, I was much better on it than the EC. I hope it is the same for you. Like my friend @naughty_boob says, we all react differently. The bit I hated most was quite definitely not being able to taste savoury food which brings me neatly onto @norts and @luckylychee and the cheese straws! What I would have given to have been able to taste cheese for the last few months. Oh the bitterness and disappointment was ever present. Every time I tucked into a baked spud (one of my favourite things ever) covered in humous, beans and cheese and yet again remembered it tasted of precisely nothing. I like the analogy of a blindfold buffet. I have also been able to keep working throughout but I can work from home so this has been a massive help. I could taste sweet which led to lots of cake and weight gain. Fortunately this is now being reversed.
@wu21 Welcome and I’m so sorry have had to join us, in the nicest possible way!! But we’re a bloody great bunch so you couldn’t be in a better place. So chuffed that our resident consultant @luckylychee has been able to give you an informed answer. How fortunate are we?! @naughty_boob is also excellent at the facts, figures and useful information so good stuff there too. Good to know that @entropy is in a similar situation and so the course of action being suggested would not seem unusual.
Seriously, I am in awe of some of the brains we have on here and the knowledge we share. This is fortunate as my forte is the more frivolous nonsense at which I excel!! I have had my hair shaved off as it is growing back nicely now. Because of this I am now singing ‘Nothing Compares 2 U’ loudly to everyone who is seeing me for the first time since having it done. One needs to entertain oneself! It doesn’t look half bad actually. Quite freeing in many ways. A damn sight better than that knitted hair, that’s for sure.
I have my mastectomy this week on Wednesday. Bring it on, I say. Let’s get rid of this troublesome boob once and for all.
Hello all HER2 positives. I wish to join please. Thought I wouldn’t need to as original biopsy was negative , but final histology was positive. Start chemo next Monday, not looking forward to it, but what will be will be. Tried on various wigs last Friday and really happy with the one I am having.
Hello @bigpickle Delighted to welcome you and sorry you’ve had to join us in equal measures. Isn’t it crap?! We will be with you all the way and make sure you join the August chemo starters if you haven’t already as having your group of women at exactly the same point in treatment is invaluable.
Great that you’ve already picked your wig. I ended up with seven! It got a bit out of hand. I could see it becoming a new addiction and knowing what I am like, I thought it best to nip it in the bud! Wigs are great though. I just love picking my hair, whacking it on my bonce and never having a bad hair day. I also love how quick it is to wash a crew cut. My water bill is going to be considerably less. So you see…there ARE some positives in this sh*t show.
Indeed, there are some positives. Pre surgery the consultant described me as having significant ptosis. I admit I didn’t know what that meant. Post surgery that definitely doesn’t apply, nice and pert now if I say so myself!
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