Large lobular tumour

Hi thank you  yes I am having an implant. Did you have drains, how is the pain.  My first surgery was a theraputic mammoplasty with reduction on other side, and I had no pain.  Is there much swelling. Best wishes xxx

Hi Shaz52,

I didn’t have drains as my surgeon doesn’t use them, which worried me a little at first wondering where the excess fluid would go but I am glad now that I didn’t have them and only have a very small amount of fluid so my surgeon made the right decision for me.

I didn’t have reconstruction as after having implants for 13years wanted to give my body a rest . (Although it is slightly odd looking down at my completely flat chest.)

ive hardly had any pain ,more a tight discomfort at times , but very manageable.

wishing you all the best for you upcoming op x

Hi,

I am 54, diagnosed last April 2021 age 53 with invasive lobular like yourself.  Had three tumours largest near 5cm in total 8cm. Had mastectomy left breast and and 4 sentinel lymph nodes removed.  One node had cancer less then 2mm (class it as a (micro stat) so I had 8 cycles of chemo, 4 AC and 4 taxol, had radiation to chest wall only not lymph nodes due to cancer being under 2mm did not meet the criteria (preferred to have had glands done) but rules are rules. Had the high dose radiation only 5 sessions in total.  Now on hormone therapy (tamoxifen) started November so active treatment completed.  ER• PR+ HER2-.  Seen my oncologist today so will not be going back to hospital until April my 1st  year anniversary for mammogram only.  Then July first 6 month check up from finishing  active treatment.  So scary now that I only connect if I feel something is not right or new ache not going away, otherwise just attend the normal standard follow up appointments.  Love to know how your getting on now? Your not alone, no one is brave with cancer, we all share the same fears and stress.  I always said my results are my pain not the treatment, as no matter how difficult that is, you get there, because we all love life.

Hi Carol57

I have since undergone auxiliary clearance(13th Dec) as my 2sentinal nodes contained cancer . They removed a further 26 nodes which luckily did not contain any cancer cells although a scan detected an enlarged internal mammary node which we still do not know whether this is cancerous or due to trauma of surgery.

I have recently had a telephone conversation with oncologist and awaiting an appointment to have a pic line fitted ready for chemo, although no definitive date yet. I will be be having 3 Ac chemo and 3 Doxitaxol . Feeling more nervous about this than either of my operations then have been informed I will have 3 or 4 weeks of radiotherapy. I did ask about the 5day course but  I was told due to lymph nodes being positive I would have to have the longer course of treatment. They will also treat neck area . 
I don’t understand why they don’t treat nodes even with small amounts like yours but like you say rules have to be followed.

I can fully understand how you must be feeling now treatment has finished . I already suspect every ache or pain to be something sinister, some days I’m ok and others my mind does the overtime thing and starts running away .I must admit I felt a bit abandoned when the breast team said they were handing me over to oncology now. Although said I could contact with any concerns.

How did you find the chemo, I hope you didn’t get too many side effects? 
I hope you are feeling ok health wise.

Hi Miss K,

Your concerns we’re all mine with all treatments, scared before surgery, then not wanting to leave the care of the breast surgeon and cancer support nurses to be sent to oncology. I have to say that on a positive side I felt more mentally protected due to the support (every department of cancer care is unbelievably supportive) from very close contact with oncology nurses as they only work days so you get to know them as with AC chemo they have to syringe the chemo into the veins not a slow fusion like taxol, so then nurse  was with me constantly for over an hour and got the same nurse a few times. contact numbers day and night given and told to ring with any concerns, they go through all the procedures of what to do if unwell and how to ease symptoms etc.

Your hair will fall out, the cool cap was not offered to me as it’s a given with AC chemo you lose your hair.  I had shoulder length hair so got a very short haircut after cycle one, as you can expect hair loss from as early as day 17 and it’s fast, within days it’s all gone.  I bought two wigs, thinking and saying to myself that I would never be seen with just a scarf or hat, but after two weeks I could not tolerate the wig (itch) it was end the end of July  when I started chemo so not cold so never put wig on again to my surprise.    

Sorry for the long winded reply but I was so eager to know more and anxious at your stage so hope my insight might help you, as we are all told no two bodies are the same and we all react  differently to treatment but I do know we do share a lot of the same emotions.

I was asked before I started chemo how was my pregnancies, did I suffer with morning sickness.  I said oh no ….. I think I know where  your  going with this. I have two sons and suffered terribly with sickness, the second son I had morning sickness almost 24/7 feeling yuck.  So low and behold I suffered terrible with nausea on AC almost the whole time (cycle every two weeks) I felt less nauseous after about 7-10 days after each cycle of AC.  The anti nausea tablets I was given (3days Emend) also ones given more anti nausea tablets to take as required.  They stopped me from vomiting so even though felt so sick I never did vomit.  I ate all the way through no matter how unwell I felt  it does stand to you so keep that mindset.  I also suffered bad with a fuzzy spaced head from AC but no one I spoke to that had AC had those symptoms as bad as myself.  They slept lots, I didn’t even sleep in the day as I was never great sleeper before BC.  I stayed up never went to bed during the day, rested on the couch I did manage a walk a little  during each cycle but due to the spaced feeling I stayed inside mostly but I did my food shopping very early in the morning once a week to avoid people.  My next four cycles of chemo taxol, I had maybe one day after felt nauseous and not as spaced out and felt could do more, but did get side effects more from taxol.  Got neuropathy but tolerable, got bone pain only on taxol for two three days.  Forgot to say that aftee 24 hrs of chemo and less than 48 hrs I had to give myself an injection (neulasta) into my tummy, a nurse came to my house and did the first one so I had to do them after that myself.  This injection helps bring back up your white blood cells.  So it’s very important to follow instructions given for meds, don’t slack set timers on phone.  I only got that bone pain on taxol.  The taxol last 3hrs as it was a slow release fusion and I loved that as got to talk to all the lovely ladies, even got so many laughs as topic would go to home life etc.  it’s amazing the comfort you get from talking to others that are going through treatment too, as no matter how loving, understanding family are, can only get comfort at times from those who are walking in your shoes.  So even though I was not looking forward to each cycle chemo I loved going because got to chat and was at my best each cycle you go for symptoms (most of them) gone so get to enjoy the chat and the tea and toast.  I miss that connection very much as with radiation it’s different, faster and you go in alone.  Hope this info might prepare you a little and not scare you but like I said you may not get same side effects. I had the mindset eat, so that you stay well and white blood cells stay up to not miss a cycle.  I never missed one or had to wait until white cells recovered but it’s quiet normal to delay or even get a lesser dose of chemo that you can tolerate.  You get all the telephone numbers day and night while on chemo so don’t every be afraid to ring no matter how trivial your concerns are.  Usually leave voice message and they contact you back.  Any other questions feel free to ask.  

Hi Caro57,

Thankyou so much for sharing your experience and all the wonderful information you have given me. Don’t worry about giving long replies, i prefer to know as much as possible, even the bad stuff so I can mentally prepare myself as much as possible. The lady from oncology said I could try the cold cap ( I’m hoping to give it a go) but I know there’s a big chance my hair will still fall out. It ‘s not actually losing the hair that’s bothering me so much as the worry that I may be one of the few who’s hair never grows back. I don’t have the thickest of hair to start with.

my tumour turned out to be 9.5cm so pretty big as was yours so very surprised when only 2sentinal nodes came back positive.

I didn’t realise the AC chemo was given so quickly into the vein and I have seen ladies on here mention giving themselves an injection but wasn’t sure why so I’m pleased you have explained.( I might be a bit of a wimp giving it myself) 

I too have 2 sons but luckily didn’t suffer with sickness whilst pregnant , I do suffer dizzy spells at times so concerned the chemo will exasperate this .It’s good to know you can contact someone night and day with concerns that’s made me feel better.I can’t fault the NHS with all my treatment so far , all my breast team have been so lovely supportive and caring.

I so wish it was this time next year and I had completed treatment, although I can fully understand how daunting it must be to sort of be cast a sail without the backup of regular checks and breast/oncology team interactions. It’s a pity there isn’t some type of group local in each area for people who have completed treatment to get together and just have chats and compare life and feelings after treatment ends , because let’s face it , life is never going to be the ‘normal’ that it was before cancer invade our lives.

Have you got a good support network around you? With family and friends. Although like you say no one really understands unless they have travelled this awful path .I’ve yet to break the news to all my family and close friends as I’ve not told anyone yet(dreading that) although will have to very soon before chemo starts. only my partner knows at present.
 I think everyone sees you getting on with things and assume you’re fine … if only they could see what goes on inside our minds eh . Well I’m always here for a chat , moan , rant  so don’t be afraid to contact me whenever, I would welcome the chat .

Sending hugs