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Lobular BC

13 REPLIES 13
Stephie82
Member

Re: Lobular BC

Thanks Mai, I've just looked at Drydrinker.com and wow! It looks amazing.  I'm absolutely going to order myself some and cut out alcohol.  I see it as a relaxing thing after a stressful day but I'll make some new healthier habits I think (not that I drank excessively but you know what I mean).  Thanks so much as well for the link to the new page and setting it up! I'll go over and put a post on! Thanks again x

Mai7
Community Champion

Re: Lobular BC

Stephie82, when I was diagnosed, I was a stone heavier than I am now and regularly enjoyed going out for cocktails and gin tasting flights.  I stopped drinking immediately after diagnosis and don’t drink now except maybe a single drink at a special occasion. If you have a look on Drydrinker.com they have lots of alcohol free alternatives which are really tasty.  When you start chemo the main boost you get is filgrastim to increase your neutrophil count as chemo gives the neutrophils a good wallop.  Mine were terrible and I still got through it but always went straight to the chemo emergency line if my temperature went above 37.5 or I if I had diarrhoea, sore mouth etc.  Just be vigilant.  I still went out for country walks which was good for excerise and sanity.   Sometimes I had to turn back after half a mile if I was getting out of breath!

I usually set up the next months chemo thread about mid month otherwise it slips down and no one finds it but if you want to get started on chatting I can set it up now: 

https://forum.breastcancernow.org/t5/Chemotherapy-monthly-threads/July-2020-chemo-monthly-starters/t... 

 

Stephie82
Member

Re: Lobular BC

Thank you for those helpful tips. Its lovely you've come out the other side and helping others! I couldn't see the chemo group for July, it's probably too early. I'll keep an eye out. 🙂

It's scary having a weakened immune system during covid particularly but i guess they give you drugs to strengthen it. Wish I could just fast fwd 6 months but im sure everyone wishes that. Im really trying to get fit abd healthy. Im 2.5 stone over weight and drink a bit too much wine i think lol. Im going to try and get really healthy 🙂 i was worried about long term effects of cancer and treatment but it seems like many people can lead fit and healthy lives after. 

Mai7
Community Champion

Re: Lobular BC

Stephie82, glad to have helped you.  I like helping as others from this forum were there for me when I was scared and lost and I wanted to do the same if I survived.  You are already experienced at social isolation and being on chemo is very similar.  Be super careful with hygiene, avoid doing anything dirty (like gardening without gloves) which risks cuts and infection.  It’s important to check your temperature at least once a day during chemo and keep hydrated.  Of course you will find your own way to get through it all but I think the stories like mine give you a good start point.  I recommend you join the “Monthly chemo starters” thread on the “Going through treatment” thread in this forum to chat with others going through the same.  I found it really helpful and still keep in touch with my chemo buddies. Xxx

SueLSE
Member

Re: Lobular BC

I’m really pleased my response has helped, it’s why I posted! I was unable to have radiotherapy on the mastectomy side, as I’d had it previously in 2008, but I did have 15 sessions for the other side, where I had a lumpectomy. It is tiring, but I was able to use the bus every day to get there (centre of city, 15 miles from home, parking non existent). It left me itchy and sore for a couple of weeks, but that soon eased. I did not need chemo. I know the first time you are diagnosed it seems as though you’re the only person who’s ever had bc. But I was much more confident the next time, and I feel really fit now, and it makes you aware of how precious life is and I just value my home and my family so much more.  One thing I am looking into, but lockdown has delayed everything, is asking for an MRI scan at some point on my remaining breast, as lobular cancer is not easily detectable on mammograms or ultrasound. My consultant is happy to see me and discuss it.  

Stephie82
Member

Re: Lobular BC

Hi Jan, thank you for your reply.. That's great you're 5 years out the other side!

 

That's a good point about the nhs! I must keep reminding myself its treatable and i'll be cured.. Hard not to worry what if.. I worry they'll make a mistake in the op! Or I'll get the arm swelling thing.. Must not think like that tho! 

Stephie82
Member

Re: Lobular BC

Thank you sooo much Sue, that's amazing! I really appreciate you sharing your story.. Wow swimming in the sea 3 weeks post masectamy really makes me feel more positive. Its so nice to hear positive stories. You've really calmed my nerves. Im going to just focus on being positive and not stress or worry. Did you find chemo and radiotherapy okay? People seem to say its often not as bad as you imagine. Xx

Stephie82
Member

Re: Lobular BC

Hi Mai, I saw a post of yours earlier with a link to your blog.. How inspiring! I feel so much better for reading it! It boosted me! I just found out today its in the lymphs so full masectamy and lymph removal, chemo and radiotherapy. 6 months treatment.. Im anxious but very positive so just wanted to say thank you for inspiring me. I really needed to hear a positive story xx

Mai7
Community Champion

Re: Lobular BC

Hi stephie82, sorry you find yourself here but glad you found us. Just wanted to say Hi 👋   It’s very daunting in the beginning but I can assure you there are many of us still here and doing well.  I was stage 3 locally advanced including lymph nodes back in March 2017 and had chemo, surgery and radiotherapy.  Now on Tamoxifen which gives me some minor side effects but I feel eating healthy, avoiding alcohol and exercising regularly have kept these to a minimum.  I’ve had no recurrence despite being high risk. 🤞🤞🤞🍀🍀 sending hugs. Xx

SueLSE
Member

Re: Lobular BC

Hi Stephie, nobody can ever guarantee you won’t get a recurrence. I had lobular cancer in 2008, and then unfortunately a recurrence last year and I had a mastectomy. There was no spread to my lymph nodes that side (I also had ductal cancer the other side with one lymph node affected, but that was just unfortunate). I have recovered really well from my mastectomy and my prosthesis is comfortable and nobody would know. I was even swimming in the sea within 3 weeks of my mastectomy last July! I am 67, and am now on letrozole for the foreseeable future, and I have had no problem with that at all. As far as anyone can possibly know, I am now cancer free and getting on with and enjoying life. Just want to reassure you that even a recurrence is not the end of the world, but hopefully that won’t happen to you. Being positive is really a good way to go! Trust all goes well for you. X

PeggyCat
Community Champion

Re: Lobular BC

Hi Stephie, 

Next month will see the 5th anniversary of me being diagnosed with lobular. While I can't say that thoughts of recurrence don't enter my mind from time to time they do start to ease the further away you get from the experience. I no longer think every ache is recurrence but accept it's likely just I am getting older 😉

The best piece of advice I was given and strongly believe is that our wonderful but cash-strapped NHS would not put us through the expensive treatments if they didn't think we had a good chance of lots more years of life. 

You are going through the worst bit now when your emotions are battered and it all seems overwhelming. But it does get better. Keep us posted with progress. Lots of lovely people here to support you. 

Xx

Stephie82
Member

Re: Lobular BC

Hi Jan Thanks for your message. I do think you're right, positivity is half the battle for sure! The consultant and nurses are brilliant and I do trust them but I do worry about it all, what if they make a mistake or something but I cant think like that. I should get my treatment plan today which should make me feel a little better and you're right, the success rates are high with BC so I must focus on the positives. I'm not sure why I wont have chemo, I think they do a score and see if it benefits. I think he said it may not respond to chemo but not sure that's right. I'll ask again today. I'll definitely stay off google, you're right about that! Yes you're right about doing nice things, I do go walking and spend time in the garden too. If you have any good youtube suggestions please let me know 🙂 thank you! Steph x
Jaybro
Member

Re: Lobular BC

Hi Stephie

First of all, I’m so sorry you’ve joined our ranks. It is a very frightening time and it won’t be a walk in the park (maybe not the best analogy right now) but it is all manageable, as the hundreds of us here prove. Personally, I think the emotional aspect of breast cancer is maybe half the experience so you need to be taking good care of your emotional health right now, even before treatment starts. Having no confidence in your team and their ability to treat you successfully won’t help you come to terms with what has happened. So trust them to come up with a treatment plan tailored to your specific needs and ask them questions. But please, don’t google.

The recovery rate for breast cancer is high now. Since you don’t seem to require chemotherapy, the risk of it having shifted elsewhere in your body may be lower than in the kind of cases you are thinking about, my own for example. For some uncharacteristic reason, I seem able to have stopped myself thinking about recurrence, though even that isn’t the end; it’s just more treatment you really didn’t plan on doing more than once! However, I made a huge mistake and I googled my NPI score, which I’d seen when my breast care nurse was giving me all the details I hadn’t wanted to know till treatment was over. The shock made me ill and it took her wise words to get me grounded again. In the interests of her privacy, I don’t think I should put them In the public forum but I will send you a private message if that’s ok. I hope you’ll find it makes you rethink.

Meantime, focus on your emotional wellbeing. Run, walk, garden, eat chocolate, meditate... whatever suits you. I have relied on Youtube videos throughout my treatment and they’ve worked brilliantly, considering what an anxious person I am. Ring the nurses here for reassurance - they are brilliant. And remember the high recovery rate for breast cancer now.

All the best

Jan x

 

Stephie82
Member

Lobular BC

Hi, I was diagnosed with lobular BC in may.  Had lots of scans and Its not spread although just waiting for biopsy results of one slightly enlarged lymph. I understand its treatble and i feel so grateful but im already anxious it will return. Ive heard of cases of BC returning aggressively in bones etc. I know no one can say it will or won't come back for sure but im desperate for positive stories about it not returning if anyone has any? Treatment plan is likely masectamy, radiotherapy, then tamoxifen for 10 years. Its hormone receptive which is a good thing. Will tamoxifen stop it coming back?? So grateful for any positivity please xx