I am good thank you. Back at work full time. I have lymphodema in my hand, arm and breast but it seems to be under control. I had 3 lymph nodes close together affected and then a 4th closer to my neck. When I had radiotherapy I had an additional area that covered my neck (to just under my chin). X
its lovely to hear that there actually is an alternative route and I hope that it has been successful for you.
I intend to get some more info on my lymph node results and would be grateful if you don’t mind me asking you questions.
I do get the impression that they are concerned about the lymph nodes leading up to the neck need more investigation , hence the CT scan and the Oncologist saying that Radiotheraphy May be required for 3 rather than 2 areas.
How are you now ? Xx
I am writing to let you know that I joined the Optima trial. I was diagnosed September 2017. 15mm tumour removed by lumpectomy. Grade 2. 4 out of 13 lymph nodes affected (2 were micromets).
I did a lot of research regarding the Optima trial and I was fortunate to get tested (it's a blind trial and only half get tested) and the results came back as no Chemotherapy required so I went straight to 15 sessions of radiotherapy. Let me know if I can answer any questions for you. Regards. Michele
spent all day 9-4 at hospital today. Heart scan , seroma drain, oncology doctor to give my decision , CT scan phew!
Got home and slept for 2 hours , absolutely drained .
Wow , the Oncology dept is very sobering I agree . I felt very emotional sitting there. I kept thinking that will be me in a few weeks.
I am always so grateful and polite to all staff in all depts for all the care they are giving me , but, for some unknown reason ( very out of character) my prickles go up with the Oncology doctor . I just can’t help it , I am very curt with her . We have only had 2 very short sessions and I don’t dislike her.
I feel so bad when I get home about my behaviour / attitude .
There have been 2 oversights on my treatment info , which she has apologised for ,but I don’t think this is the reason for my attitude . I just can’t explain it at all !
I would be interested to hear if anyone else has this irrational attitude .
Now waiting the results of CT scan , heart is Ok, and I have opted for the Optima trial which looks further into the need for chemo and treat with hormone therapy , but am advised that my chances of dodging chemo are very slim☹️
Going back to work on Monday yay 😁
Good luck on Thursday! I have found all the oncologist really lovely and the two BCNs who specialise in oncology are great. You are in good hands, but it is sobering how busy the oncology department is.
Might see see you Around?
Pleased to hear that you have surgery booked - YAY!
I will follow the thread as I have absolutely no idea about anything to do with Chemo apart from needing a wig .
I will have more idea on the dates after Thursday , but am opting for the research study option which is designed to
predict if Chemo will be of benefit to me or if it can be safely avoided and dealt with by hormones
Good luck with the Maggie Centre , I hope it is worthwhile xx
Hi, Anika and Bebe28
Good to hear your news,
Sorry to hear you’ve got to have Chemo, I can understand your shock. I am HER2+ so have had to had it before surgery. I am just about to have my last dose next week. 7 cycles, 4 of docetaxel, Herceptin and Perjeta followed by 3 of EC. So I am happy to help if I can. But do join your monthly thread on this site. Mine has been a life saver at times!
After my appointment last week, I was back again on Monday as well! I agree the clinic was much calmer and running smoothly. My surgeon was still not happy with the MRI so sent me off for a mammogram to get another view of what’s going on. I think I was borderline for having a mastectomy! Anyway, he then decided that he would do a lumpectomy, but take a larger amount to try and get clear margins. He then whipped out his diary and said “ how does the 20th March suit you? “ I could have kissed him! I just want to get on with it! So sorry if I held everyone up as I must have spent a hour with him in total.🤭. So I was then packed off to pre assessment ( who were most unhelpful) I have to have my pre assessment three weeks from my last chemo but 10 days before the op. So that leaves one day. They claimed they had no appointments, so I would just have turn up at 8.00 and wait for a walk in!
Back to to see the oncologist on Thursday for bloods before chemo next week, I have also booked in to the Look Good, Feel Well session at the Maggie Centre, I thought I would give them a challenge 😂😂.
appointment today for results and seroma drained.
Professor Benson asked about care after discharge and was quite cross when I explained what had happened. He wants it looked into !!!!
Got to have Chemo now as 6 out of 16 nodes affected .
The clinic was running smoothly with loads of staff and no sign of any pressure .
I would have asked if they were busy , but my Chemo news left me very shocked 😨
ps I had 2 surgeons , one for boob Alessio ( he is so nice) and Prof Benson for lymph nodes.
I cant fault either of them , they are so lovely and very caring .
If you get either of them you will be fine .
Perhaps we will bump into each other one day 😊
Went to my appointment for results today ☹️ No further surgery , seroma drained ( ahh) and follow up appointment for another drain on Thursday .
Result breast clear , 6 of the 16 lymph nodes removed were affected . Chemo needed 😖
that was a shock . I was told I would only need radiotheraphy before the op .
Went straight into to see the Oncology doc to explain a little about chemo (EC)
Given all the paperwork to read through and appointment to see her again on Thursday after the seroma drain.
The clinic was running smoothly , no signs of being under pressure.
So now I will be going down the Chemo road , any tips from anyone will be gratefully received.
I hope your op goes well on the 5th .
Just got my day of the operation confirmed today and it will be on the 5th March Not sure why I feel excited but I guess I am just relived it will be done soon and they will be finally able to tell me if that is it or if I need more treatments.
Badboob, I am sorry to hear you need chemo, when did you start it? I know nothing about it but maybe they need to see first what effect it has on you and what else needs to be done. The wait is the worst but hopefully you will get there before you know it.
Bebe28 good luck on Monday, I will be at the hospital as well but doing my genetics tests.
Did any of you ladies tried that Maggies Wallace place?
I am due at the hospital for results etc on Monday 11th. so I will let you know what happens and how busy they are .
Fingers crossed, I dont have to go back to surgery !
I have been discharged from the community nurses today and they are amazed at how quickly my wounds have healed.
Drain & stitch pieces came on Tuesday , but still very sore and anxious about Monday.
Started to feel a bit more human and less of an invalid ! YAY!
Hi, I’m another patient at Addenbrooke’s and went to see my surgeon on Monday to discuss my op. I got the feeling that they were very overwhelmed, they couldn’t give me any sort of date just said it will be between 4 and 8 weeks after I finish chemo.
i think they are trying to get everyone ( the surgeons) to use their hoilday entitlement up before the end of March. My BCN said that they were pooling patients and depending where you are on the list, then you just get slotted in with which ever surgeon has space!
I don’t blame you for getting stressed! I’m not happy about it either, this rubbish is hard enough without any other nonsense!
Hope you are doing well and recovering quickly 🤗
They meant to call me at the beginning of this week to confirm the operation day but haven't yet 😕 getting a bit stressed as they mentioned two dates and one is in just over 7 days time so really want to know which day so can start arranging things plus that wait is really not helping my mood xxx
Hi Anika ,
Sending you hugs for your upcoming surgery.
I agree although its a very good service , it can be very matter of fact . I spoke to the nurses on the phone re aftercare and I felt that I was back at school after one conversation.
There are brilliant at Addenbrookes and the surgery day went so much better than I had anticipated. They put you at ease so quickly , before you know it , you are back on the ward with offers of pain relief , food and drink and going home.
There is no rush , you just recover at your own pace .
The community nurses are now coming out to me and they are just great , very down to earth and nothing is too much trouble. My drain comes out today and I cant wait - Shackles are coming off .
Hoping all goes well ,i am sure it will . xx
Glad it is resolved. I am awaiting surgery at Addenbrooke's myself but still wasn't given a date. As nice as they all are I do feel sometimes like they forget this is not everyday for us like it is for them and that we may need bit more information and reasurance. I have called the nurses in the breast unit on few occasions when feeling very unsure or not informed enough and they were always very helpful, hope the rest of your recovery goes well xx
Thank you for your replies . My GP surgery have now found my discharge doc and referred me to the community nurses. I am having the dressings looked at this evening as I am sure they are causing pinching . Phew 😅 what a relief .
It appears that the surgery had overlooked the referral , lucky I didn’t just leave it to deal with myself .
Hi there Bebe28,
sorry to hear of the problem you have had recently, I hope things improve for you. I had two operations, because the first didn't result in clear margins.
After the first, I was told to remove the dressings after 10 days. I was scared, too, so made an appointment with the nurse at the GP surgery (it doesn't hurt to make sure someone there knows what you are going through, as the letters can take a while to catch up). It really wasn't as bad as I expected, and I managed to take the dressings off myself, the 2nd time. You might want to have some baby oil or similar available afterwards to make sure all of the sticky residue comes off easily, though.
At the worst, you could possibly leave the dressings on until your follow up appointment, as I know some people have done that.
Hi - I was told to take my dressings off after a week -I had lumpectomy and SNB .All seemed pretty well healed just very bruised .I saw the surgeon 2 weeks after the op for a follow up .If you have any worries after removing your dressings ring the breast unit for advice .
I was diagnosed on 3/12/18 and booked for surgery for lumpectomy and lymph node clearance on 8/1/19. On the 5/1/19 I was then diagnosed with shingles and surgery cancelled 😩. Surgery was then carried out on 25/1/19 at Addenbrookes Cambridge .
Diagnosed as grade 3 metastic , oestrogen receptive with biopsy on one lymph node. Right breast tumour 7-9mm. Now at home recovery without referred community nurse care. I had to call 111 ( on Sunday) to be put in touch with community nurses as I had no idea what to do with a filling drain . The nurse visited on Sunday and showed me what to do , I have no idea when and if I will have another visit and the Breast unit have advised me to remove dressings on Thursday . OMG 😮 I am terrified , what if I don’t take them off correctly . Surely this is something a trained nurse needs to do . Any advice please would be really welcome