Meant letrozole
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Hi kaq
It was Anastrozole actually. The received wisdom is that all Aromatase Inhibitors - which prevent oestrogen production - reduce your risk of recurrence of hormone receptive breast cancers … but only by a few %.
I stopped taking hormone therapy for 3 reasons :
a) I was one of the unlucky ones who suffered quite badly from debilitating common side effects (I tried for 10 months). It’s the simple lack of oestrogen that causes most of these, not any particular drug ‘recipe’ itself. Some people tolerate this lack better than others, and changing to a different brand/drug can improve things for some, I hear.
b) I was terrified of them causing me any of the VERY rare but nevertheless devastating permanent damage.
c) As lobular cancer is shamefully under-researched (under-funded) and its very different subtype’s biological make-up/behaviour little-understood, the drugs currently available have been developed on the basis of ductal cancer data, therefore not targetted for lobular cancer and therefore may have little or no effect.
That’s only my personal conclusion after trying to educate myself as best a layman can, having to search for information which oncologists usually seem unwilling to divulge or discuss thoroughly. They’ll freely recommend the various drugs they’re keen to promote, though.
(The Oncotype DX scores for both my different cancers were relatively low, so chemo not considered to be of significant benefit to me.)
Best of luck with whatever path you choose 
because that’s what it can ultimately boil down to anyway.
Hi Misty
Thanks for your reply. I have a similar attitude toward treatment for lobular. Everything I read was that the chemo drugs are less effective for it. I pushed back on the chemo but they said it would still help in that although it’s not as fast growing it still more rapidly dividing than normal cells (chemo kills rapidly dividing). I had more positive nodes and low intermediate onco. It’s the number of nodes that is problem I guess. Wouldn’t have needed chemo if it stopped at 1. I’m doing TC they wanted me to do AC-T which seems more toxic.
Don’t know that I’m doing right thing or that it will help - have side affects already concerned about.
I’m sorry the hormone suppressant pills didn’t work out for you. I dread that step but dealing with one thing at a time. As far as I know estrogen is good so this all sucks.
I’ve seen more on this forum about lobular than elsewhere so I think it’s good to discuss it here.
I apologize for being off the main topic here.
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Hi kaq
Can’t offer any opinion on chemo, I’m afraid, but wishing you all the best and hoping you will arrive at the choices you will be able to live with (no pun intended!)
Have you checked in with the topic “Attention all Invasive Lobular Breast Cancer Ladies” which I started back in Oct '23? When and if you’ve the time and the inclination, there’s a link in my first post there to The Lobular Moon Shot Project which is raising awareness and research funding. They are lobbying parliament quite effectively, hoping to get them on board and to pledge much more substantial government funding.
Good luck with your treatment/s. 
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I got the results of my full CT scan yesterday. And I’m so glad I got it as it’s changed my treatment plan.
At my first oncology appt they said the cancer has gone (2 lymph nodes and clear margins) so they ordered an OnCotypeDX saying that we’d use that info to determine chemo or not.
Went in yesterday and the oncotype is not back yet but CT shows 3 more lymph nodes likely affected. Therefore with 5 in total they say I need chemo!
They also found something in my pelvis so I’m having an MRI. They say it’s benign bone islands but being sent for another scan(MRI) to confirm has set my worryometer to high.
If I hadn’t had the CT scan and the OnCotype comes back low then I wouldn’t be having chemo!
It all seems so subjective sometimes.
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Thanks much. I did see that early on and going back looking in there.
I’m curious about the ROLO trial I’ve learned of, possibly on here. Thinking for the future; hoping there will be effective rather than ineffective or semi effective treatment. The chemo
I’m doing is manageable, just don’t know if it’s doing anything…
Have a great weekend,
Thanks
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Dear Warmfuzzies,
I would like to wish you well with your ongoing treatment, as we all know breast cancer together with the treatment involved is not a walk in the park, but hopefully doable.
Be kind to yourself, with health and happiness going forward. We have all been there and we are here for you.
Biggest hugs Tili 
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thanks @Tili Ive been bombarded with appointments in the last 24 hours so chemo is now booked for 7 April and my MRI on my pelvis is next week.
Feeling a little overwhelmed, despite knowing what was coming, I think its just seeing it in the calendar next to the fun things I will be missing is whats hit home and made me feel incredibly sad.
Thanks for your reassurance. Every little bit helps me get my equilibrium back, so I can go again as all the things that need doing. x
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I had a mammogram, ultrasound and biopsy after discovering a small indentation in my breast which turned out to be caused by a tumour which measured about 1.2 cm according to the mammogram and ultrasound. I’d had a clear routine mammogram 2 years before.
The biopsy results indicated Grade 3 tumour with a high proliferation index, hormone sensitive but Herceptin neutral. Surgery confirmed the biopsy results for the lump except that its spread within the breast was 3.5 x 4.2, also that it was in 2 of the 3 sentinel lymph nodes removed 1 of them with extracapsular spread.
After those results I was sent for staging scans to check for metastasis to bones or the rest of my body. I was relieved that the results of those showed that I had primary breast cancer only. I think that the spread beyond one of the lymph nodes coupled with the aggression grade was behind the decision for the scans. Both the bone scan and the PET CT scan involved having radioactive injections.
The cancer had been removed with clear margins, but after chemotherapy I accepted having axillary lymph node clearance, but no evidence of cancer having been in any of them was discovered. I went on to have 15 radiotherapy treatments to the breast and lymph nodes above my collar bone and 4 more to the breast alone. I did question the lymph node clearance and the neck lymph nodes being included in the radiotherapy, but accepted them, and then have gone on to take abemaciclib and am nearly half way through that.
On my first visit to the one stop breast clinic, the radiologist had said that the lump would definitely have to come out and further treatment would be determined by pathology results on the biopsy he was about to do and later on tissue removed at surgery- and so it’s turned out. If the lump had been just in the breast and not in the sentinel nodes in the way it was, the aggressive potential seemed to indicate chemo and radiotherapy would be for me anyway and I would have gone on to have them and not had the staging scans and the lymph node clearance. I probably would still be getting the abemacilib 
This has been a bit long, but basically it was only after surgery results that the scans were mentioned, discussed and ordered. It was stressful going for them, they carry their own potential downsides but I was relieved at the results…
All the best,
C xx
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thanks for sharing your experience @cynoptimistic. I find the whole scans/results cycle so stressful but alos reassuring in an odd way. My CT scan showed 3 more lymph nodes affected so definitely chemo whereas without the scan results it all seemed a bit borderline.
If I’m going to have chemo it feels better psychologically to know I need it for sure.
Hope your doing as well as possible with your treatment.
Kath x
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Thank you, I’m not bad at all really. I had a winter of getting different ailments, whatever was going round really. Perhaps for me it’s been the cumulative effects of my past treatments, the ongoing abemaciclib and possibly still stuff that’s going round which went under the radar during the varying pandemic lockdowns and periods of “alert caution”.
Since October until a couple of weeks ago I would have a few days of being better from something and then the next thing would start. A long lasting cough and more recently persistent sinusitis were the worst. “Better” means feeling a bit tired plus assorted finger, foot, hot flush and occasional tinnitus with slight nausea symptoms.
The illnesses did get me down though, but I feel very positive about the cancer treatment. Blood tests have been fine/okish and abemaciclib should finish late April 2026, last zoledronic acid infusion January 2026. Then continuing letrozole for a few years will mean I’ll have accepted all that’s been offered along the line in the name of curative treatment for a high risk of return cancer. I’ve got a mammogram this May, and had a clear one last May. I think I’ll feel confident about them for 2 or 3 years more then go in with more trepidation!
All the best to you Kath
Sue x
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hey Sue @cynoptimistic sounds promising on the whole despite the ups and downs of infections and ongoing issues. We got caught in sniper alley but we have a good chance of popping out the other side albeit not quite unscathed.
Im practising gratitudes (to save me going nuts) so Im grateful that we have the NHS and all the treatments available to us. i really cant fault the support Ive been given so far.
all teh best
xx
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I completely agree Kath @warmfuzzies! I’m so glad that expert treatment and caring support has been there for me. The treatment plan evolving according to what became apparent as we went along has been good. Late Feb 2023 I would have been so shocked and daunted by someone laying out the possibility that I would be having significant treatment up until April 29th 2026, with one pill to carry on with for a few years more! I’m glad I found out as we went along and was able to become informed and have questions answered.
There’s been some horrible days, but I’ve felt fairly safe though occasionally pretty grotty,
xxx
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@cynoptimistic its good to know you have felt safe. I think thats what Im afraid of. Waking in the night and feeling unsafe. Sepsis scares me and the idea of having to stay away from my life because of the risk of infection. Im not yet sure how all that works but I feel like Im going to lose most of the year. Still, its necessary and you’re right that the gradual progress does help you get your head around it.
Im not sure Im onboard with the first consultant I saw saying that Id be done in 3 months! Huh! That couldnt be further from the truth.
@warmfuzzies I think we all find ways to keep ourselves safe in the best ways for ourselves. Hopefully with the warmer weather on the way activities outside will help you stay a bit more involved and safe from infections. My husband and I used to go away at the end of the second week of chemo to an Airbnb so we were away from people but had something to look forward to. We also embraced pubs with pods for eating or outdoor eating. It does feel like a pain at the time but the weeks go quickly by
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Hello @shade - I completely relate to your post. I’ve never taken a pill in my life & have always been so fit and healthy. Mentally I am really struggling with my diagnosis. How did you adjust?
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Hi sbee,
It has been difficult to accept my illness. In my head I believe I will finish this medication and will return to a near normal life. Cancer has changed me but some of these changes have been beneficial. It has been 21/2 years since my diagnosis and I now accept that our lives are time limited and that eventuality we all die, but until illness and death remove me from this life I appreciate all the milestones I reach, family events I can take part in and all the experiences I can enjoy. Life is precious and I have decided to enjoy it and not worry about what I can’t control. With time I believe we arrive at acceptance. I wish you well.
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Thank you, I’m only 38 and it totally blindsided me. I can’t understand how or why… I’ve never eaten meat, i don’t smoke, haven’t taken any medication. Was a big yogi and kept fit. I’ve barely even had a cold.
Thank you for coming back to me. X
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Sbee,
I am so sorry. Life can be very unfair but you will get through this treatment and come out the other end. Sending a virtual hug.
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HI @MistyK thanks for this. I’m picking this thread up a bit later and hope you’re okay. I was wondering if the doctors ever gave an explanation as to why the non sentinel lymph node had picked up the cancer and not the sentinel and if anything was ever done as a result of this? I also have lobular and one non sentinel rather than sentinel lymph node positive for cancer (awaiting axillary clearance) and I’m just looking for other people’s experiences with this. Many thanks.
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