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Topic: Can't have mastectomy

Forum: IBC (Inflammatory Breast Cancer) —

Just diagnosed, in treatment, or finished treatment for IBC. Posting pictures of symptoms is prohibited per our Community Rules -- you are encouraged to seek medical advice from your doctor in the event of any concerns.

Posted on: Jan 20, 2021 05:49AM - edited Jan 20, 2021 05:51AM by Gayna

Gayna wrote:

I have had LCIS since 2017, which has been successfully treated with anastrazole and Zoladex since diagnosis. It's still there but not grown at all. Last Friday I saw my surgeon as I had new symptoms, which are highly suspicious of IBC and had mammograms and ultrasound with 2 biopsies, results due Friday to confirm type. If it is I've been told chemotherapy is the treatment. Unfortunately I can't have a mastectomy as I was told at 1st diagnosis I'm not fit for surgery due to co-morbities, COPD, morbid obesity, diabetes, liver fibrosis, severe sleep apnoea (I have a cpap machine for this) among other things, so that's still not an option. My question is would chemotherapy be enough to "cure" me? Luckily I'm English and we have the NHS so the cost/insurance isn't an issue. If anyone can help I'd be most grateful.

Gayna

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Jan 20, 2021 06:39AM MelissaDallas wrote:

Hi Gayna. I’m sorry you find yourself here.

I think your question is far too medically complicated for most of us here to intelligently weigh in on.

I do have questions though. It sounds like you must have had some invasive cancer found along with your LCIS. I have LCIS and have never heard of Zoladex being used along with an AI for a precancerous/benig condition like LCIS. Additionally, pure LCIS is almost never seen on imaging, it is almost always an incidental finding on a biopsy for something else, so since it isn’t seen on imaging, how could it be monitored to know that it had not grown.

I hope your biopsies show something “simpler” than IBC. I know you must be very anxious waiting for your results. Let us know what you find out.

LCIS, extensive sclerosing adenosis, TAH/BSO & partial omentectomy for mucinous borderline ovarian tumor.
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Jan 20, 2021 07:31AM Gayna wrote:

Hi Melissa

You're quite right, just got out my original diagnosis letter and it's actually a pleomorphic or invasive lobular carcinoma in situ, grade 2 not LCIS. I remembered wrongly as I haven't really had to worry or think much about it for 4 years and LCIS was their 1st thought until further tests were done and that stuck in my head. Should've checked before posting really but thought I got it right. I get confused with all the acronyms! I should know better being an RN, but in mitigation I retired due to ill health a couple of years ago! Thanks for your kind, supportive and prompt reply, I'll come back after Friday to update you. Hope you're keeping well yourself 😺

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Jan 20, 2021 07:34AM - edited Jan 20, 2021 07:36AM by MelissaDallas

Gayna, it is fine. It is really common, especially if it is the initial diagnosis, for folks to remember the LCIS or DCIS and not the later invasive diagnosis.

Invasive is not “in situ.” It is really hard to learn all the acronyms and “cancer speak.”

LCIS, extensive sclerosing adenosis, TAH/BSO & partial omentectomy for mucinous borderline ovarian tumor.
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Jan 20, 2021 07:48AM - edited Jan 20, 2021 07:58AM by Beesie

Gayna,

By IBC, do you mean "invasive breast cancer" or "inflammatory breast cancer"? IBC - inflammatory breast cancer - usually presents visually with severe breast symptoms such as redness and swelling. Are these your symptoms?

To your question "would chemotherapy be enough to "cure" me?", what's important to understand is that a mastectomy is not curative and in most cases makes no difference in the prognosis. Surgery, whether a lumpectomy or a mastectomy, is a localized treatment, removing the cancer in the breast. But breast cancer in the breast is never fatal. The concern with breast cancer is metastatic breast cancer, which is when breast cancer cells have spread to other parts of the body. In most cases when this happens, the cancer cells moved out from the breast into the body well before the cancer was even discovered. So a mastectomy is kind of like closing the barn door after the horses have escaped. A MX is beneficial in reducing the risk of a localized (i.e. in the breast area) recurrence or a new breast cancer down the road, but as a general rule does not reduce the risk of mets. Chemo is used for that. Chemo is a systemic treatment - it goes into the whole body - and it is used to track down & hopefully kill off any rogue breast cancer cells that might have moved into the body. Chemo reduces the risk of a metastatic recurrence, but unfortunately even chemo is not a guarantee.

The one exception to what I've described is if the area of cancer is very large and/or comes right up to the chest wall - which I think may often be the case with IBC. In those cases, a MX is medically required in order to fully remove all the cancer from the breast. Although breast cancer in the breast isn't fatal, if breast cancer cells remain in the breast, there is a greater possibility that some of those cells might eventually move on into the body. So the goal of surgery is to fully remove all the cancer from the breast. With a lumpectomy, as an extra precaution, radiation almost always follows, as a way to kill off any rogue cells that might remain in the breast area. After a MX, radiation often isn't needed because removal of the entire breast usually fully removes all the cancer. But sometimes rads is given even after a MX, if there is concern that some cancer cells might remain against the chest wall or in the nodal area.

Hope that makes sense. Good luck with your biopsies. With luck, this isn't cancer at all, or not IBC.

Edited to add: Hopefully someone with IBC drops by soon to comment, because I realize that a MX is usually done for IBC. I don't know if that would change anything I've said.


“No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
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Jan 20, 2021 08:00AM Gayna wrote:

thanks Beesie

I mean Inflammatory Breast Cancer. My breast is pink/red over approximately half of it with thickened skin, especially my nipple which looks and feels like elephant hide. Been on antibiotics for over a week with no response, in fact it's getting steadily worse. Been getting occasional shooting pains through it as well. Thanks so much for getting back to me so quickly, a lot of what you said is really reassuring 😺

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Jan 20, 2021 08:38AM Beesie wrote:

Darn, I was hoping that it wasn't IBC that you were looking at. If it is IBC I guess the question will be whether all the localized cancer can be removed without a MX.

For clarity, was your ILC surgically removed and did you have radiation? And it is the same breast? That's another complication because rads can't be done to the same area twice.

Definitely a complicated situation.


“No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
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Jan 20, 2021 08:58AM Gayna wrote:

I couldn't have a mastectomy last time for the same reasons so the medication has done well holding that one for 4 years. I can't have any surgery as the anaesthetist won't touch me, he said I'd be unlikely to make it off the operating table, so all I can hope for is chemotherapy keeping me going if it is IBC. Had meds changed last Friday as it's clearly not effective on the new cancer, whatever it is. Fingers crossed for Friday though

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Jan 20, 2021 08:59AM Gayna wrote:

and yes, it's the same breast 😺

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Jan 20, 2021 10:17AM Beesie wrote:

Gayna, if you can't have any surgery at all that is a different question than not being able to have a mastectomy. Chemo is the systemic treatment used to reduce the risk of metastasis, and it does address the cancer in the breast as well, but you still need to remove the localized cancer, particularly I would think if it's IBC and it's spreading. I don't know what the options would be. I'm way out of my depth here. Hopefully someone with IBC comes along to comment.

Fingers crossed here too that you get good news on Friday.

“No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
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Jan 20, 2021 12:26PM Gayna wrote:

thanks Beesie 🤞

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Jan 22, 2021 05:52AM Gayna wrote:

Hi Beesie

Just got back from hospital and it's good-ish news. It's NOT IBC, which is great but it is an aggressive cancer that needs treatment. My new Consultant says he will send me for a full body scan to ensure I have no mets then will ask for a new anaesthetic assessment in hope they will reconsider putting me to sleep for a mastectomy. He said despite me being very high risk for anaesthetic he is prepared to do the op if the anaesthetist will do it. I'm thrilled that they are at least reviewing this, as if I can't have it done the alternative is letting the cancer keep growing until it finishes me off.

Wanted to let you know asap as you've been so kind and supportive. Thanks again.

Gayna Smile

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Jan 22, 2021 07:32AM Beesie wrote:

Gayna, good news that it's not IBC. Not good news that it's an aggressive cancer. It certainly makes sense that they are looking to see how they can operate, as safely as possible.

You might want to start a new thread in the Just Diagnosed forum, detailing what's happened. More people will probably read it there and comment. I don't know if anyone has been in a similar situation, but you might try a subject line such as "Need surgery but high risk for anaesthesia" or something like that to see if anyone else has experienced something similar.

“No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
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Jan 22, 2021 09:07AM Gayna wrote:

Thanks Beesie, I may well do that Smile

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