Newbie just had surgery

[Anika623]

Hi Bebe, 

Thank you for thinking about me.  My surgery was on the 5th, long 16 hours, it all went well and I stayed in the hospital for nearly a week. Was feeling horrible for few days after, but that was down to me feeling extreme nousea for few days. I had 8 drains connected to me and the last 2 were only removed the day before discharge. On the day of the discharge I noticed some lumps in my underarm but was reassured by 3 different doctors at different times that was nothing to worry about. It was incredibly painful and kept growing and came out on the other side as well, thank God went to Gp the next day and she just looked at it and said its infected and I need antibiotics as it won't go away on its own. I end up in A&E the night I was discharged as had problems breathing, they did some additional tests and all was fine so couldn't really tell me why, but possibly becouse my body was working overtime trying to recover. It took few days but it seemed to settle now. Still taking it slow and not allowed to do pretty much anything and God I miss having a shower!!!  I had my results already, that was very strange and quick appointment and lasted only few minutes - I wish they would take their time to explain things properly and give us time to take things in. It is a good news tho as they said its all gone now. The cancer was a bit smaller than they thought and it was still grade 1, the lympnodes were clear, the dcis on the other side was much bigger than they thought but again all removed now. I assume all the margins were clear but they didn't mention it, just said its all gone now and I just need pills for the next 5 years. Don't need more checks etc but have another appointment in 3 months with them, not sure what will happen than. Don't know where I should get the Tamoxifen from as they didn't tell me. Have big list of questions to ask them so need to call the breast nurse. To be honest I am not sure how I feel about all this, it's been such a roller-coaster of emotions, in January I was diagnosed with cancer, we are in March and apparently it is all gone now. I know I should be relieved and happy right now but I am struggling to get my head around what's happened 😔 there is moments I feel like fraud, the whole thing only lasted just over few months, and how can they be certain I don't need other treatments, they said if there is anything left behind they couldn't see the pills will deal with it, will that be enough tho, isn't there any test they can do to make sure it is definitely all gone? I have 2 small kids I can't take chances. Few days ago also a member of the family (not imidiate family) passed away. She was bateling the cancer and was told it was gone, all good, than few months later it came back and spread everywhere. It was sad news and it just put more doubts in my head. Will I ever be able to forget about it all or will it be constant fear of worrying if it comes back.... I am sorry, I don't want to be insensitive, I know that you and many other ladies go through much more and cannot wait to hear the all clear news and must think "what on earth is she on about, she should be extremely happy right now". I think I just need more time to process it all. Its only 3 months since I was diagnosed and there was no time to get to terms with anything, appointment after appointment, shock after shock, decision making without having time to process it all. Think I just need more time....

Anyway, enough about me, how are you getting on? Did you start your treatment yet? Maybe we could meet one day, once I am aloud to drive again, at that Maggies centre?

A xxx

[Bebe28]

Hi Anika, 

how is everything going ?

Have you had surgery ? 

Results for me were 2 weeks from surgery at check up stage x

[Bebe28]

Hi Michelle ,

I can now accept that the fatigue is really going to get me .

my employers are great and have just told me to do whatever I need to . I am just going to try and go in where possible and work from home when it’s not possible. 

But I might book a weeks leave for the peak , just so that I don’t feel as tho I am taking advantage . Ridiculous I know but you can’t help how you feel , especially when they have been so good and understanding.

i am pleased to hear you are through the other side and wish you all good wishes for your continuing recovery Yay to Optima , I am so pleased I opted for it x

[Bebe28]

Hi Badboob,

My next appointment next week is with the Optima nurse and Oncologist , I will try and behave myself . If I fail , I can always blame the fatigue at 10am  😂😂😂😂.

Hope it is going Ok for you x

[Bebe28]

Hi Jill,

Thank you for your reply . 

I really had not considered that the appointments could be all over the place😳. 

I want to stay working for my sanity , I am really not good staying at home as my attention span descends to zero . I need my work !!!!! I will try to balance attending and working from home the best I can . I will let you know how it pans out . Also I have 4 Audits over the next few months , ha ha ! That could be interesting , me sleeping through my auditors summing up ! 😂😂😂

[Bebe28]

Hi Monica, 

Thanks for your reply . Looks like the fatigue is set to continue then .

i will just judge each day as it comes , trying to make the effort to go into work or work from home . I am very lucky to have that option .

i will prepare for the cough , have once been a smoker I am sure that my sins will punish me 😂. Power naps are the best , just not at my desk !!!!

[Bebe28]

Hi Anika , 

At Addenbrookes, After surgery you get your discharge letter which has your next appointment with the surgeon already booked . Two weeks after surgery . 

I hope that everything goes well for you . 

I think I will just try and carry on as normal with work during and after Radiotherapy, they are so good , I will try and balance out going in and working from home depending on how I am feeling . I have been told by my Bosses , just do whatever you need to 😁. I do think I am very lucky to have a very understanding  office who are genuinely concerned about my health .

Having a weekend away before treatment which I think is going to help 😁😁

[Anika623]

Sorry not sure what happened but posted it before I finished

Anyway I just wanted to say I am glad to hear the good news. I was told I will need hormon therapy but hopefully not radiotherapy and reading your comments I really hope not as I am already exausted, I don't know how I would cope being even more tired 😴 

How long did you ladies had to wait for the results after the surgery?

Xx 

[Anika623]

Hi

Tried to keep myself away for a while but only few days now left to my surgery 😱 

[monicanatura]

Hi Ladies 

I’m on day 8 of 15 of Radiotherapy, and I am definitely feeling fatigued. A power nap after has been beneficial. When I had surgery in December, I don’t recall feeling as fatigued. 

Radiotherapy is definitely a lot easier then chemo. 

I also have a cough, however I’m taking propolis and medihoney which is really helping. 

[Jill1998]

Hi Bebe - I agree with Michelle - if there are not pressing economic reasons for you being at work I would get signed off for the duration of radiotherapy and a couple of weeks after when the effects peak .I found that after the first week I was absutely shattered.It can involve alot of travelling and waiting around in the hospital - machines were always breaking down at my Unit and the appointments can be very random e.g. one at 7pm next day 8.30am so hard to get into any sort of routine with work etc .

[Badboob]

Excellent news Bebe28! I can imagine how relieved you are. Having now finished my chemo I feel like a huge weight has been lifted. I’ve been very lucky, some of the lovely ladies on my monthly thread had a really terrible time with multiple hospital admissions and being very poorly, whereas I have just been overwhelmed by tiredness.

I understand that Radiotherapy is a breeze in comparison just a pain having to pitch up every day for a short visit, with all the parking nonsense at Addenbrooke’s . I am sorry that you didn’t gel with your oncologist. Mine is just lovely, but I have met others who  definitely  didn’t have the knack of connecting with their patients, so it’s not you! 

Best wishes

[Optimisticmz]

Hi Bebe.  That's good news about the chemotherapy. I truly believe that the Optima trial will hugely benefit other ladies in the future. I was off work whilst going through my treatment & had a long phased return to work around 4 months (I am self employed). Even now, a year after radiotherapy ended, I still get days where I feel absolutely shattered. Can  you speak to your employer and get signed off sick for radiotherapy and for a few weeks after? I found my symptoms peaked 2-3 weeks after radiotherapy ended. Look after yourself. Michele X 

[Bebe28]

Hi Michele,

Quick update. The Optima trial nurse called on Monday and said I would not benefit from Chemo 😊😊😊. I can’t tell you what a relief that was !

I am going to need hormone therapy drugs for 8 years and radiotherapy appointment is next week .

CT scan came back clear and my seroma has been drained for the third time and I think it’s now sorting its self out - phew 😅 

Not sure how many sessions of Radio will be needed until my appointment , but I am worried about the fatigue side of things. It’s now a month and 2 days since my operation and I have been back at work for 2 weeks ( desk job) but by 3pm I am exhausted and go home usually for an hours nap. 

Work are absolutely fine with my reduced hours but I worry it will get worse with the radiotherapy.

Did you or (anyone reading this ) suffer with this prolonged fatigue or is it just to be expected ?

Bebe 

[Debbie-Maggie]

I had a right mastectomy and total lymph node removal yesterday. No drain. I have to take the dressing off after six days. My surgery was delayed for six months after diagnosis because I’d had two minor heart attacks (NSTEMI) in February. When I went to the outpatient appointment mid August,after two pre op assessments, to sign the consent form for 31st. August the surgeon casually mentioned the chest infection I’d had in May when I’d had a lot of tests. He didn’t say anything in response to my “What chest infection”. The next thing I knew was an appointment for another CT scan. After that scan, two days before my planned op I had a phone call asking if I could go to outpatients as soon as possible. The “chest infection” I’d never had was a lung lesion on the left side. After he’d left the room the BCN who I’d never seen before told me my condition was “terminal, treatable but not cureable. The problem with holidays needing to be taken may be why that surgeon had two six week holidays in six months. Initially I had a dedicated BCN except she didn’t tell me she would be on Maternity Leave before my op ( I’m not very observant and thought she was overweight) . She informed me by phone, sent a load of leaflets by post but didn’t tell me who was taking over from her. It was disorganised to put it politely. My few calls weren’t always answered and when they were I got the distinct impression I was a nuisance. The wonderful  local cancer support charity got me a second surgeon and tried without success to get me a dedicated BCN. By then my trust in the breast surgery department was not good. I had thoracic surgery at another hospital. The specialist nurse there was totally different and gave me the results of the biopsies over the phone. All the cancerous tissue had been removed, the biopsies elsewhere in the lung and lymph nodes were clear. Also the two cancers were unconnected. As my second surgeon said I was very lucky. I’d told him about the nurses ‘diagnosis’ the first time I saw him as with that prognosis I was seriously considering not having any sort of treatment. He said nothing about the nurse then but when I saw him to again sign a consent form I asked him if the lung lesion was why she said what she had. He just said yes. After my lung surgery there was a gap of three months when I heard nothing from them. I eventually phoned and suddenly it was all rush. The lung biopsy results had gone to the first surgeon/ his secretary and not been forwarded. Sorry I seem to have poured out my life story. I hope I’ve posted in the right place. 

[Optimisticmz]

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

[Bebe28]

Thanks Michele.

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

[Optimisticmz]

Hi Bebe

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

[Bebe28]

Hi Badboob, 

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 😁

[Badboob]

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?

hugs x

[Bebe28]

Hi Badboob,

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

[Badboob]

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 😂😂.

Hugs

[Bebe28]

Hi Badboob 

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 😊

[Bebe28]

Hi Anika,

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 . 

[Anika623]

Hi

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?

🤗🤗

A

[Bebe28]

Hi,

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!

[Badboob]

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! 

[Anika623]

Thank you, 

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

[Bebe28]

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

[Anika623]

Hi Bebe28,

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

[Bebe28]

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 .

[Adrift]

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.

Good luck.

[Jill1998]

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 .

[Bebe28]

Hi Everyone,

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